Annual Report CofE by Tourette Association of America

CENTER OF EXCELLENCE TOURETTE ASSOCIATION OF AMERICA CENTER OF EXCELLENCE ANNUAL REPORT SUMMARY

Presented at the Tourette Association of America Center of Excellence Annual Meeting Tuesday, April 26, 2016 Sheraton Gateway Atlanta Airport Hotel | Atlanta, GA

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Tourette Association of America Centers of Excellence for Tourette & Tic Disorders

Seeking to improve the quality of life of people with Tourette and Tic Disorders by promoting the highest level of care, research, education/awareness and outreach/advocacy for these conditions RESEARCH & MEDICAL PROGRAMS 42-40 Bell Boulevard, Ste. 205 Bayside, NY 11361 P: 718.224.2999 F: 718.279.9596 E: CofE@tourette.org tourette.org/CofE Kevin McNaught, Ph.D. Executive Vice President Marc Scullin, MA Manager Denise Walker Administrative Assistant

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Table of Contents Program Criteria & Blueprint ..................................................................................................................................5 - 9 Centers of Excellence Map & Flyer ......................................................................................................................10 - 13 Southeast Regional Centers of Excellence Annual Report ......................................................................14 - 25 UCLA Center of Excellence Annual Report .....................................................................................................26 - 28 The Johns Hopkins Hospital Center of Excellence Annual Report .......................................................29 - 32 Childrenâ&#x20AC;&#x2122;s Mercy Hospital Center of Excellence Annual Report ............................................................33 - 35 Yale Child Study Center of Excellence Annual Report................................................................................36 - 39 University of Utah Center of Excellence Annual Report.............................................................................40 - 42 New York State Consortium Centers of Excellence Annual Report .....................................................43 - 53 Massachusetts General Hospital Center of Excellence Annual Report .............................................54 - 55 Baylor College of Medicine Center of Excellence Annual Report .........................................................56 - 59

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PROGRAM CRITERIA & BLUEPRINT MISSION STATEMENT The Tourette Association’s Center of Excellence (CofE) program seeks to improve the quality of life of people with Tourette Syndrome and other Tic Disorders by promoting the highest level of care, research, education/awareness and outreach/advocacy for these conditions.

OBJECTIVES OF THE TAA CofE PROGRAM The CofE program aims to address the significant variability in the level and quality of care, research on and education about TS and related disorders. In this respect, the development of outstanding interdisciplinary and multidisciplinary care models for the field is a key objective of the program. In addition, the program seeks to advance research in all relevant areas, and improve knowledge of the condition among both affected and unaffected people. Specifically, the CofE program addresses the following problems in TS: • Diagnostic variability, conflicting recommendations and lack of coordination of therapeutic strategies among care providers. • Poorly defined care models and uncertain impact of many interventions. • Unrecognized, mis-diagnosis and/or poor treatment of non-tic features. • Need for more scientific and clinical research focused on gaining a better understanding of TS/Tic Disorders and the development of more effective treatments. • Lack of training programs and opportunities for medical (e.g., M.D.), allied (e.g., Dr. O.T.) and scientific (e.g., Ph.D.) fellows in multiple sub-specialties. These are needed to expand and ensure continuity of expertise in TS/Tic Disorders. • Poor awareness and understanding of TS and related conditions among community physicians, allied health professionals, patients, families and the general public.

TAA CofE DESIGNATION Existing healthcare facilities or academic institutions (private and public) in the US that already attain or aim to meet qualifying criteria set forth by the TAA, pass the peer-review process, and are approved by the organization’s internal processes may receive the designation of ‘TAA Center of Excellence’. Prospective Centers of Excellence, which may be constituted from one location or a consortium/network of regional sites, should ideally demonstrate the following before or after designation: • Comprehensive care based on the best available evidence and current research findings. A willingness to innovate new approaches for the best care possible. • An interdisciplinary team approach for patients and families throughout the life cycle, from very young children to adults. Regular CofE interdisciplinary team meetings and regular CofE business meetings are encouraged. • While research is not an absolute requirement for a CofE designation, they are strongly encouraged to undertake or collaborate on investigator-initiated, hypothesis-driven, clinical and/or scientific research in areas relevant to the advancement of the understanding, treatment, and dissemination of effective interventions for TS and related disorders. • Training and education of clinicians, scientists and other professionals who may become future experts in TS and related disorders. • Participation in advocacy and awareness for people touched by TS and other Tic Disorders.

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CofE SERVICES TAA CofEs are expected to provide excellent clinical care for people with TS and related disorders, encouraged to conduct or collaborate on high quality research in areas relevant to TS, help to train/ educate professionals and/or lay people, and engage in outreach/advocacy activities: 1. Clinical Care The TAA CofE should have the capacity to provide evidence-based, multidisciplinary (or interdisciplinary) evaluation and treatment tailored to the complexity of patients seeking assistance for TS, Tic Disorders and their co-morbidities. Initial evaluation by a physician is recommended to ensure that all medical issues are addressed at the outset, but this is not an absolute requirement. Demonstration that all major care areas are covered is essential, although Centers may have latitude in designating different specialists to cover different functions of care. The credentials and training of the specialists, as well as a plan to integrate the team and to have regular care conferences, must be evident. Centers should focus on quality of care rather than quantity of patients seen. In this respect, CofEs are not mandated to see an absolute number of patients in any given time period. We expect that: • Patient numbers will vary significantly depending on the geographical location of the Center. • Larger volume Centers may justify seeing fewer new patients to focus their resources on the intense treatment of their existing patients. • Centers may specialize in one-time consultations and provide integration plans to return patients into the community, while others may specialize in continuing care. • Regional Centers may choose to work together to cover sparsely populated (e.g., some parts of the west and mid-west) and densely populated (e.g., New York Metro) areas, for the convenience of the patients. CofEs are required to provide information on the practices and services available as well as the care model they adopt. Centers will be asked to specify whether these services are provided in the Center, through collaboration within their host institution, or through partnerships with external entities. CofEs are required to report the number and types of patients they see annually. TAA CofEs are required to detail the processes for evaluation and follow-up for each potential patient cared for, and show how services will be integrated and delivered. Also, Centers should provide details of a plan that includes regular comprehensive care and business meetings. 2. Research Research is not an absolute requirement for a CofE. However, where possible, CofE are encouraged to undertake or collaborate with other institutions and investigators conducting research on TS and related basal ganglia conditions. Such research could be laboratory-based scientific investigations, clinical research, or psychosocial/ behavioral studies. Research should not be limited to industry sponsored trials. There should be evidence of scholarly, hypothesis-driven, investigator-initiated, basic and/or clinical research within Centers. CofEs should show collaborations with other investigators and Centers. There are no specific research areas required for Centers. However, research must be relevant to TS or related conditions, and if not immediately obvious, the applicant must explain the link of their research to TS. Research on other Tic related disorders or related co-morbid conditions such as Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Attention Deficit Disorder (ADD), etc. is encouraged. The presence of a database to track potential clinical-research subjects and a system to inform patients of opportunities for research participation during visits to the TAA CofE is highly encouraged.

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Information will be collected on funded grants, active research studies, areas of research expertise, and publication records where available. 3. Training, Education and Awareness TAA CofEs are required to provide varying levels of training and education for healthcare professionals, including medical students, residents, fellows, graduate students, Ph.D. students and post-doctoral fellows. Rotations through the services, electives with faculty, and opportunities for student mentorship are encouraged. Centers will be encouraged to apply for TAA funding for fellows and graduate students through existing TAA programs. Education and awareness for patients, caregivers and the general public are needed as well. There is no specific requirement for training and education within a CofE, but activities in one or more of the aforementioned areas are important. Centers are required to provide information on previous trainees, locations, and links to TS care, research or education. In addition, Centers are required to provide a list of all training and educational programs, including CME’s and CE’s. 4. Outreach and Advocacy Involvement with and support for the national TAA, local chapters and support groups are a must for each CofE. Centers should seek opportunities for outreach in their communities and promote local TAA-related activities. Centers should have a plan to disseminate TAA educational materials, as well as inform the TAA of any educational materials produced by their team or facility.

THERAPIES OFFERED WITHIN TAA CofE A TAA CofE is expected to offer a range of accepted medical, behavioral, surgical (where appropriate) and other therapies for TS and related conditions. There must be a demonstrated expertise with credentials for providers offering these therapies. Although there are no specific guidelines that are widely adopted across the field for TS care, the Center must demonstrate that they are providing excellent care that is based on existing guidelines and recommendations, even if a Center does not adhere to every specific expert recommendation. Comprehensive Behavioral Intervention for Tics (CBIT) and Cognitive Behavior Therapy (CBT) should be available to patients. If these therapies are not available within the Center, there should be a clearly defined collaboration or referral plan to link to experts who have sufficient training and experience in administering these treatments. Deep Brain Stimulation (DBS) is still investigational, but could offer additional treatment options for individuals with severe, drug/behavior therapy-refractory and injurious (e.g., spinal cord injury) tics. The availability of DBS at the site or a plan of consultation/collaboration with other facilities is encouraged. Botulinum toxin therapy can be an effective treatment for some focal tics. Availability of botulinum toxin, or a plan detailing a collaboration to provide these services should be available.

CofE PERSONNEL A TAA CofE interdisciplinary team should reflect the Center’s clinical, research, educational and other activities. The Center will be led by a Director/Co-Directors or Principal/Co-Investigators who have the responsibility to establish, maintain and run the Center in compliance with the TAA’s CofE criteria and all applicable local, state and federal laws. The Director/PI can designate a clinical/research coordinator and define the role of all personnel operating within or collaborating with the Center. Also, the Director can designate Co-Directors or

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Co-PI’s from regional sites if a TAA CofE has a regional strategy or is constituted from a network of facilities. The team should include an experienced neurologist, a psychiatrist and a psychologist (or another credentialed provider, trained in behavior therapy) with qualified experience in child and adult care. The core personnel do not need to include adult and pediatric practitioners as long as there are affiliated providers who can demonstrate a commitment to the Center and an ability to function over a diversity of age ranges. Ideally, there should be a coordinator who could be a nurse, nurse-practitioner, social worker, or other provider who would be available to facilitate care, manage interactions with school personnel (in the case of children), and have the ability to effectively address psychosocial problems. Team members should be experienced and knowledgeable in the evaluation and treatment of patients with TS, OCD, ADHD, and other related disorders such as mood and anxiety problems, trichotillomania, self- injurious behavior, and skin picking. A TAA CofE, in which research, training and educational activities are present, should have suitably qualified and experienced professionals working within or affiliated with the Center. The credentials and relationships should be provided for all such individuals.

TAA CofE APPLICATION PROCESS Private or public healthcare facilities, or academic institutions, in the US may apply for designation as a ‘TAA Center of Excellence’. The prospective Center Director/PI will be required to complete and submit an application to the TAA using a specific application form. The application will request relevant information as mentioned above, including demographics; historical numbers of patients; innovative programs; collaborations within and outside of the Center; outreach activities; goals and objectives; current structure; changes planned once CofE status is granted; personnel bio-sketches; specific plans for clinical care (evaluation, consultation, treatment, training and education); current research portfolio, including grants under review; faculty publications; and most importantly, justification as to why the applicant should become a TAA CofE, and how their Center will be a model for TS care. Evidence for innovation in combining clinical care and research, or innovation in other areas, such as teaching models for residents, medical students and graduate trainees, will be sought. A willingness to collaborate on research activities occurring elsewhere is encouraged if a Center does not have their own research programs. In addition, the applicant will be required to provide details on what CofE status would mean in terms of added value for the Center, how quality of services will be assessed, and the level of current and future institutional support, financial or otherwise. The application can be strengthened by the inclusion of a letter detailing leveraged funds from elsewhere if a TAA CofE designation is obtained.

SELECTING TAA CofE All applications for CofE designation will be reviewed by an unbiased, non-conflicted, panel of experts comprising: • Clinical and scientific experts in TS and related disorders, as well as experts from other fields • TAA Chapter/Support Group and Patient representatives • TAA Board of Director (BOD) members

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• TAA’s Vice President for Medical and Scientific Programs (Chairperson) Panel members or individuals from their institutions can apply for TAA CofE designation, but such members will not be involved in the review process. Applications from individuals with TAA links will be reviewed by independent, impartial, experts. The panel of experts will review full applications and each will be assigned a score/rank based on their quality. These applications will be presented to the TAA’s BOD for consideration. Applicants that receive BOD approval will be notified and will receive the TAA CofE designation which will be granted for 3 years. Existing and prospective Centers may receive site visits as part of the evaluation process.

POST-AWARDS After the designation of a TAA CofE, Centers will be required to submit annual progress reports and demonstrate continued adherence to the requirements of the CofE program. Further, Center Directors/ PI will be required to participate in an annual TAA CofE meeting.

MANAGEMENT OF TAA CofE & LIABILITY The Center Director(s)/PI and the head of his/her institution are responsible for the day-to-day operations of the Center. Also, they required to ensure that the Center complies with all relevant laws, guidelines and standards at all times. They will be required to take steps to prevent and respond to potential misconduct and all unlawful activities. Also, the Center Director/PI is required to receive and address all complaints and inquiries from patients and other parties. The TAA will present, for signature, relevant forms approved by the TAA legal counsel to all CofE facilities and institutional personnel. Terms and conditions of the TAA’s award will have to be accepted by the institution to receive the TAA CofE designation. The TAA reserves the right to withdraw its CofE designation at any time for violation of its terms and conditions and other requirements of the program.

FUNDING & SUPPORT The aim of the TAA is to provide, within its limitations, what is required to assist existing institutions to become “excellent” with respect to treatment and other activities relevant to TS and related disorders. The type and level of support will be dictated by a needs-assessment during the application review process and will vary from Center to Center. For example, some Centers may require financial support to purchase equipment for a clinic or laboratory; hire or retain personnel; or fund the training of a physician in the latest therapy for TS. Some Centers may require salary support for key members of the care or research team. Other Centers may not require financial support, but may require educational material from the TAA, extensive assistance with conducting clinical trials, and other related programs. Finally, the TAA envisages that some Centers will not require any support from the Association, but seeks the CofE designation as they have met all required criteria. Funded Centers will be awarded up to $50,000 per year for 3 years to be spent on TS relevant activities as set forth in the budgetary component of the application. Centers may strengthen their application by providing institutional or other leveraged support to share/match a commitment from the TAA. It is considered that the TAA CofE program will be a major tool for fundraising for the Center. Therefore, Centers are encouraged to engage in related fundraising and promotional activities for themselves, as well as with and on behalf of the TAA.

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TAA Centers of Excellence for Tourette & Tic Disorders

CENTERS OF EXCELLENCE MAP

WA MT

OR ID

SD WY NE

NV UT CA

University of Utah

University of California LA

TX Baylor College of Medicine & Texas A&M University

PR Virgin Islands

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New York State Consortium University of Rochester Medical Center Weill Cornell Medical College Northwell Health System Icahn School of Medicine at Mount Sinai

MA RI CT

MI PA

IA OH MO

Childrenâ&#x20AC;&#x2122;s Mercy Hospital

Massachusetts General Hospital

Yale Child Study Center

DE WV

MD DC

The Johns Hopkins Hospital

TN AR

SC MS

Southeast Regional University of Alabama at Birmingham Emory University School of Medicine University of Florida University of South Florida University Specialty Clinics

LA FL

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COORDINATED CARE FOR TOURETTE & TIC DISORDERS The Tourette Association of America’s Center of Excellence (CofE) program aims to improve the quality of life of people with Tourette syndrome and other Tic Disorders by promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions. The program, which was developed in collaboration with leading medical and scientific experts in Tourette and related conditions, was launched in 2014 with the initial designation of 10 CofEs located at premier medical and academic institutions across the United States. The Centers are collaborating with the Association and our professional and lay communities to address many needs and concerns across the following key areas as detailed in the program Blueprint.

EXPERT & COORDINATED CARE

TAA CofEs provide timely and accurate evaluations of TS and related conditions. Thus, patients can receive coordinated care using evidence-based treatment and management approaches from multidisciplinary teams of care providers.

RESEARCH

TAA CofEs conduct or collaborate on scientific and clinical research studies within their own institutions or elsewhere. These investigations aim to provide a better understanding of TS/Tic Disorders, their impact, and to advance the development of more effective and safe treatments.

EDUCATION & TRAINING

TAA CofEs provide training and education to healthcare professionals and researchers on Tourette syndrome, Tic and related disorders. These centers also help educate patients, families and the general public on these conditions.

ADVOCACY & AWARENESS

TAA CofEs work with the national Association and its local chapters and support groups to improve awareness and advocate for TS in their local communities and nationally.

TOURETTE.org • 888-4-TOURET

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CLINICAL SERVICES OFFERED AT CENTERS OF EXCELLENCE INCLUDE: •

Child and Adult Neurology and Psychiatry

•

Allied Health Care Providers

•

Evaluations, Diagnoses and Advice

•

Medical Treatments

•

Behavioral Therapies (e.g. CBIT/CBT)

•

Counseling and Psychological services

•

Occupational Therapy

•

Deep Brain Stimulation (DBS)

•

Botulinum Toxin Therapy

TOURETTE ASSOCIATION CENTERS OF EXCELLENCE CLINIC LOCATIONS TOURETTE ASSOCIATION CENTER OF EXCELLENCE: BAYLOR COLLEGE OF MEDICINE Houston, TX Director: Joseph Jankovic, M.D. Co-Director: Suzanne Mouton-Odum, Ph.D. (713) 798-2273 TOURETTE ASSOCIATION CENTER OF EXCELLENCE: CHILDREN’S MERCY HOSPITAL Kansas City, MO Director: Keith Coffman, M.D. Co-Director: James Batterson, M.D. (816) 234-3674 TOURETTE ASSOCIATION CENTER OF EXCELLENCE: THE JOHNS HOPKINS HOSPITAL Baltimore, MD Director: Harvey Singer, M.D. Co-Director: Marcos Grados, M.D. (410) 955-4259 TOURETTE ASSOCIATION CENTER OF EXCELLENCE: MASSACHUSETTS GENERAL HOSPITAL Boston, MA Director – Jeremiah Scharf, M.D., Ph.D. Co-Director: Sabine Wilhelm, Ph.D. (617) 726-5532

University of Alabama at Birmingham Birmingham, AL Director: Leon Dure, M.D. Co-Director: Jan Rowe, OTR/L, FAOTA (205) 638-6820 University of Florida Gainesville, FL Director: Michael Okun, M.D. Co-Director: Irene Malaty, M.D. (352) 294-5400 Palmetto Health Columbia, SC Director: Rebecca Lehman, M.D. (803) 434-7961 University of South Florida St. Petersburg, FL Director: Tanya Murphy, M.D. Co-Director: Adam Lewin, Ph.D. (727) 767-8230 Southeast CofE Coordinator Heather Simpson, MOT, OTR/L (352) 294-5385 simph@shands.ufl.edu

TOURETTE ASSOCIATION CENTER OF EXCELLENCE: NEW YORK STATE CONSORTIUM

Clinic website: www.TouretteCareCenters.org

Weill Cornell Medical College New York, NY Director: John Walkup, M.D. Co-Director: Shannon Bennett, Ph.D. (212) 821-0789

TOURETTE ASSOCIATION CENTER OF EXCELLENCE: UNIVERSITY OF CALIFORNIA, LOS ANGELES Los Angeles, CA Director: John Piacentini, Ph.D. Co-Director: James McCracken, M.D. (310) 825-0122

Northwell Health Manhasset, NY Director: Cathy Budman, M.D. Co-Director: Jane Zwilling, Psy.D. (516) 562-3051 University of Rochester Medical Center Rochester, NY Director: Jonathan Mink, M.D., Ph.D. Co-Director: Heather Adams, Ph.D. (585) 275-2808 Ichan School of Medicine at Mount Sinai New York, NY Director: Barbara Coffey, M.D. Co-Director: Wayne Goodman, M.D. (212) 659-1660

CENTER OF EXCELLENCE: UNIVERSITY OF UTAH Salt Lake City, UT Director: Michael Himle, Ph.D. Co-Director: Francis Fillouix, M.D. (801) 585-1086 Clinic website: www.TSUtah.info TOURETTE ASSOCIATION CENTER CENTER OF EXCELLENCE: YALE CHILD STUDY CENTER New Haven, CT Director: Robert King, M.D. Co-Director: Michael Bloch, M.D. (203) 785-5880

TOURETTE ASSOCIATION CENTER OF EXCELLENCE: SOUTH EAST REGIONAL Emory University School of Medicine Atlanta, GA Director: Jorge L. Juncos, M.D. (404) 778-3444

FOR MORE INFORMATION, VISIT TOURETTE.ORG • 888.4-TOURET

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University of Alabama at Birmingham (Birmingham, AL) A division of the Southeast Regional TAA CofE Director: Leon Dure, M.D. Co-Director: Jan Rowe, Dr. OT, OTR/L, FAOTA

Emory University School of Medicine (Atlanta, GA) A division of the Southeast Regional TAA CofE Director: Jorge L. Juncos, M.D.

University of Florida (Gainesville, FL) A division of the Southeast Regional TAA CofE Director: Michael Okun, M.D. Co-Director: Irene Malaty, M.D.

University of South Florida (St. Petersburg, FL) A division of the Southeast Regional TAA CofE Director: Tanya Murphy, M.D. Co-Director: Adam Lewin, Ph.D.

Palmetto Health (Charleston, SC) Part of the Southeast Regional TAA CofE Director: Rebecca Lehman, M.D.

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Palmetto Health (3)

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SOUTHEAST REGIONAL CENTERS OF EXCELLENCE ANNUAL REPORT We are grateful for the designation of the Southeast Regional Centers of Excellence (SE CofE) from the Tourette Association of America. Since its inception, there have been many positive steps towards improving the quality of care for those affected by Tourette Syndrome and tic disorders in the Southeastern United States. With this unique consortium, we are able to offer a comprehensive coverage system that has been able to better serve patients across the geographical region. We are happy to share with you the following report establishing the pillars of the CofE program.

Clinical Care In the SE CofE, we are proud to represent five large academic universities with nationally recognized specialists in the care and treatment of Tourette Syndrome and Tic Disorders. Each center provides a multi-disciplinary team approach to treating TS and since joining the consortium, each center offers CBIT. Our centers have their own flavors and strengths, but unite for the common cause of Tourette. Unifying the SE CofE is our clinical coordinator, Heather Simpson, who devotes 20% of her time to administrative service for the CofE program, allowing for improved clinical care and coordination of services across all five centers. Heatherâ&#x20AC;&#x2122;s role in the team is to be a central contact person within the center to ease access for potential patients and their families. Heather then serves as a central hub that relays information to the patients and helps them identify which clinic best serves their needs. In a few instances, complex and underserved patients have contacted Heather, and charity care has been identified. Patients needing more than one provider have also been helped to identify service providers in their home region. Heather also helps coordinate support group activities and social events for people with tics. The CofE funding allows for face-to-face collaboration with annual 1-2 day meetings in which we review progress, identify areas needing attention, and collaborate in discussions to improve care and research. We also have follow-up conference calls yearly to discuss patient care and collaboration and to keep the initiatives moving forward.

Research One of the more exciting features of the SE CofE program is the collaboration in research across the centers. Each center hosts independent research, and the CofE unites in group endeavors as well. Currently, we have two active research studies that are being completed across the centers including: Red Cap Database collection: each center is now collecting tic specific screening tools that will be plugged into the RedCap Database system to be shared across all centers. This can be utilized for future research to have a large dataset of patient information. Handwriting and Tourette Syndrome: completing two standardized handwriting assessments to look at dysgraphia in TS and comorbid conditions

Training/Education Each CofE provides individual training in its geographic area. However, this coming year, we also plan to host a CDC training at our annual meeting to increase capable healthcare professionals in the South Carolina area and to reach out to the rural populations that need TS education. In addition to training providers, each SE CofE will have a representative at the Camp Twitch and Shout program as part of the training model to increase behavioral and environmental awareness at the camp for the good of campers, leaders, and family.

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Outreach/Advocacy As part of our SE CofE outreach, we have relied on virtual outreach as our primary method to increase awareness and disseminate information about TS. To do this, we have created a website (www.tourettcarecenters.org) that hosts information about Tourette Association events, webinars and patient stories. In addition to that, we post monthly blogs (at times for adults and children) that provide information about management of TS and tic disorders. We have also become active on social media with Twitter to promote events and recent happenings of the TAA and the SE CofE. Our CofE feels that support groups are important. We have directed a small amount of funds to each center to promote engagement with their local TAA support groups. This may involve purchasing materials or starting a program. The SE CofE has agreed to provide mentorship (with help of the North Central Florida TAA support group) to any support group leader who is interested in starting a support group. Increasing coverage and support to the Georgia and South Carolina areas is an important aim of our CofE in the upcoming year. In conclusion, we appreciate the support of the TAA with this designation of the CofE. We feel that this partnership has led towards the greater goal and mission of the TAA in making life better for those affected by TS.

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CHILDRENâ&#x20AC;&#x2122;S OF ALABAMA (COA) AND UNIVERSITY OF ALABAMA AT BIRMINGHAM (UAB) CENTER OF EXCELLENCE ANNUAL REPORT UAB/COA has had an active year since the announcement of our Center of Excellence status in 2015. The following report will highlight our activities in clinical care, research, training/education and outreach/advocacy.

CLINICAL SERVICE: Dr. Dure has seen 250 patients with movement disorders with 83 having a diagnosis of TS, chronic or transient tic disorders. Dr. Dure triages patients for CBIT. When his patients are referred to CBIT they are ready and motivated to participate in therapy. In addition, the CBIT program receives referrals from pediatricians and pediatric neurologists from across the state of Alabama and 8 other states (Alaska, Florida, Georgia, Illinois, Kentucky, Michigan Mississippi, Tennessee). Co-Director Jan Rowe also Skypes with patients from Hong Kong and Australia. In 2015, 108 patients were referred to and participated in CBIT. The OT observed in 12 different schools, provided training in 4 schools regarding TS, OCD and anxiety and participated in 10 different IEP or 504 meetings.

RESEARCH: We currently have two active studies. One is a data base study the SE CofE is involved in to track data captured from four assessments. The 5 institutions included in the SE CofE agreed to collect data using these instruments and data will be uploaded to RedCap at UF for data mining. Another study is a 3 site handwriting study. This will help us ascertain if there are handwriting issues among children with TS and tic disorders. The three sites participating are UF, USF and UAB. The study was approved at the end of 2015 with only a few patients seen prior to the new year. Lastly, the two occupational therapists with the SE CofE have also begun work on an occupational therapy assessment to amend with the permission and assistance of the original author. This is a tool used in both clinics and being amended to better fit our populations. Once complete we will launch a study to assess strengths and weaknesses as compared to original instrument.

TRAINING/EDUCATION: The OT at UAB/COA has been involved in the training of other occupational therapists for the past 2.5 years. In collaboration with Dr. Bennett from Weill Cornell we continue to finalize the CBIT training manual for occupational therapists. Three training workshops have been completed since our designation as a CofE. The first for occupational therapists was at the first SE CofE organizational meeting in Birmingham. Since then we have done 2 trainings (Pennsylvania and Georgia). We now have 43 occupational therapists trained in CBIT but many fewer OTs on the provider list. Our clinic has also had observers throughout the year. Residents, pre OT students and pre-med students have attended. We have also done lectures and seminars for departments at UAB/COA on TS and CBIT.

OUTREACH/ADVOCACY: The OT from UAB/COA participated in two different TAA community partnership programs (Wisconsin and Michigan) in 2015. Dr. Dure and Jan Rowe also met with the President of the Alabama Tourette Association in order to plan for state wide activities and outreach. The CBIT clinic helps advertise the Alabama TAA Chapter activities throughout the year. In February the UAB/COA CofE was the first to do a TAA sponsored Webinar on Executive Dysfunction. The was streamed and recorded for wider distribution.

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EMORY UNIVERSITY CENTER OF EXCELLENCE ANNUAL REPORT CLINICAL CARE AND COMMUNITY OUTREACH: Emory University is proud to offer a unique collaboration between Emory Health Care (EHC), the Childrenâ&#x20AC;&#x2122;s Health Care of Atlanta (CHOA). The center provides comprehensive evaluation and treatment programs that encompass children, adolescents and adults. It extends from initial neurologic and psychiatric screening to deep brain stimulation (DBS) as needed. The network has been expanded to include a select number of community practitioners affiliated with CHOA. We have developed a network of twelve professionals trained in Comprehensive Behavioral Intervention for Tics (CIBIT). These include neuropsychologists who can also provide appropriate assessments as needed, and occupational therapists (OT) with expertise in CBIT. Salient among these is the Occupational Therapy program at Brenau University (Drs. Hinerfeld and Foley) who have added to the strength of our CIBIT outreach program. Dr. Hinerfeld will also be rotating through our CofE, an arrangement we plan to extend to other practitioners. With this backdrop, referrals to our center have increased from 54 (individuals most with multiple visits) in 2014 to 122 in 2015. About 1/3 of these patients are new. Many more children are seen at CHOA where the director of pediatric neurology, Dr. Ton Degraw, impressed with this growth and need, is in the process of recruiting a child neurologist with special expertise in TS. The Center with its network also provides a range of pharmacologic interventions, botulinum toxin injections for tics, community based complementary and alternative interventions, the behavioral interventions above, and deep brain stimulation (DBS) and research. TRAINING & EDUCATION: At Emoryâ&#x20AC;&#x2122;s CofE, we provide year round education in TS to medical students through yearly lectures and rotations through the TS and neurology clinics. We also have international visiting fellows (currently Dr. Sweta Patel) who spend every Friday afternoon with Dr. Juncos in clinic. All our neurology residents and fellows in Movement Disorders spend a portion of their training in the clinic (three current fellows). We have a number of community practitioners who periodically rotate through the CofE to enhance their expertise in TS. They also maintain ongoing consultation and patient exchanges with the center. Dr. Howard Schub in pediatric neurology completed a sixmonth fellowship a few years ago and continues this relationship. Dr. Jagan Chilakamary in pediatric psychiatry is completing this training now and we have streamlined the credentialing process to extend this opportunity to other practitioners who then form part of the network. Finally, for the last 5 years Dr. Juncos has been lecturing extensively in TS and its co-morbidities across the US as well as in Central and South America in English and Spanish. Outside the US some of these countries include Mexico, El Salvador, Costa Rica, Brazil, Argentina and Chile. In the process he has established professional liaison with experts in the field in each country. OUTREACH: The Emory CofE is fortunate to have many outreach opportunities in the Georgia area with the Camp Twitch & Shout program, as well as the Brad Cohen Foundation. We actively stay engaged with our families and these local organizations through fundraisers, training programs and support groups. We continually strive to explore additional fundraising methods to support the Tourette Association mission and organization, whether it is through selling CDs of a TS patient or by outreach

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and advocacy through large corporations. RESEARCH: We have been involved in the research study of the Psydon drug, ecopipam, in the treatment of tics in TS. We pre-screened over 40 subjects as have recruited 1. This is due to the nature of our referral patients most of whom have multiple comorbidities. We are about to start a child and an adult research study of NBI-98854, a drug manufactured by Neurocrine, in the treatment of TS. Since the designation of the Center of Excellence (CofE), Dr. Juncos has been collecting open-label pilot data on the use of N-acetyl cysteine (NAC) in the treatment of tics and other conditions. Using the safety, dose-ranging and preliminary efficacy data in self-injurious behaviors, collaborators in the Marcus Autism Center at Emory have obtained a University Research Consortium (URC) grant to conduct the following study: “A feasibility study of N-acetylcysteine for self-injurious behavior in children with autism spectrum disorder.” The principal investigator is Mindy Scheithauer, PhD in the Dept. of Pediatrics and Drs. Scahill and Juncos of the CofE are collaborators. This study is ongoing. The open label data on tics has been less impressive and thus far not sufficient to warrant further investigation of NAC for this indication. Finally, in the past few years we have been studying eye movements in Tourette Syndrome, specifically microsaccades (or fixational eye movements) in relation to its co-morbidities. The interesting findings stemming from this has opened the door to a new line of investigation and to our first manuscript in this area. The first author of this is Dr. Shaikh who was our movement disorders fellow two years ago and is now in the faculty at Case Western University in Cleveland. This manuscript was just submitted and data from it will be presented at our regional meeting. Dr. Finkelstein completed a thesis on the “Linguistics of coprolalia in Tourette Syndrome” four years ago and this work will finally get published as a book and has been presented in poster presentations at various neurology and linguistic meetings. Work with Dr. Finkelstein and Dr. Schuchard on an eye movement paradigm to measure inhibitory defects in TS through a go-no-go visual paradigm is the subject of a manuscript in progress. Continuation of this work had been hampered by the fact that Dr. Schuchard and Dr. Shaikh moved to other institutions with the recording equipment. We have recently secured our own equipment and Dr. Finkelstein’s personal situation once again has allowed her to continue this investigation in TS. RELATED PUBLICATIONS: Schrock, L., Mink, J., Woods, D., Porta, M., Servello, D., …Juncos, J.,…Okun, M. (2015) Tourette Syndrome Deep Brain Stimulation: A rewiew and updated recommendations. Movement Disorders; 30(4): p. 448471. Doi 10.1002/mds.26094. Ramanujam, K., Himle, M., Hayes, L., Woods,D., Scahill, L., Sukhodolsky, Wilhelm, S., Piacentini, J. (2015). Clinical Coorelates and Predictors of Caregiver Strain in Children with Chronic Tic Disorders. Children. Child Health Care 44 (3); p. 249-263. Peterson, A., McQuire, J., Wilhelm, S., Piacentini, J., Woods, D., Walkup, J., Hatch, J., Villarrel, R., & Scahill, L. (2016) An Empirical Examination of Symptom Substituation Association with Behavior Therapy for Tourette’s Disorder. 47(1) p. 29-41. doi: 10.1016/j.beth.2015.09.001. Shaikh, A.G., Finkelstein, S.R., Schuchard R., Ross G., Juncos, J.L. Fixational eye movements in Tourette syndrome with ADD and OCD. Submitted April 2016

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UNIVERSITY OF FLORIDA CENTER OF EXCELLENCE ANNUAL REPORT We are grateful for the designation of the UF Health Center for Movement Disorders and Neurorestoration (CMDNR) Tourette Association Center of Excellence Designation. Since its recognition, there have been many positive steps towards improving the quality of care for those affected by Tourette Syndrome and tic disorders in North Central Florida. We are happy to share with you the following ways that the pillars of the CofE program have been established.

CLINICAL CARE: UF Health continues to offer a wide range of skilled professionals who provide evidenced-based clinical care to both children and adults affected by Tourette Syndrome and tic disorders including: Dr. Michael Okun, Dr. Irene Malaty, two CBIT certified Occupational Therapist and the recent addition of Dr. Carol Mathews in psychiatry. We continue to have a close relationship and working partnership with our ancillary services in the UF Health system with neuropsychology, psychology, behavioral therapy and rehab services. Dr. Malaty and Heather Simpson have met with the pediatric psychiatry residents and faculty and the pediatric psychology department to educate providers on the clinical activities of the CofE, and to encourage communications and joint care. In order to demonstrate continued collaboration and quality of multidisciplinary care, the CMDNR has weekly training and case conference meetings that involve complex patients from the week that include the entire clinical team, including rehab services and psychology/psychiatry. Currently, CMDNR is working on strategies to coordinate monthly conferences with psychiatry to coordinate care of those patients served. Despite the increase in patients seeking care, quality of care and time spent with each patient continues to be a priority. Each patient has access to our physicians by email, MyChart, and to our clinic coordinator to ensure quality of care after the appointment itself. New patients to the Tourette clinic receive a “welcome packet” that provides the patient with information regarding Comprehensive Behavioral Intervention for Tics (CBIT), how to get involved with the Tourette Association (including support groups), helpful information (tic management strategies), options for a Lending Library of Tourette Association reading materials and even the “I have Tourette’s but Tourette’s Does Not Have Me” DVD if they so choose. We feel this packet enables patients to feel empowered and equipped with ample information to support their needs.

RESEARCH: At CMDNR, we are pleased to share that since the designation of the CofE and availability of a coordinator, we have been able to establish an increase in Tourette Syndrome research. We engage in clinical, medical and psychosocial/behavioral studies. Some current studies that are being offered at CMDNR include looking at: • • • • • •

Deep Brain Stimulation and TS Apathy and TS Sensory Integration and TS Handwriting and TS Response to CBIT based on subjective data Adult pharmacologic trial in TS (and anticipate pediatric study soon)

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• Gene Study (FindTSGene.org) • We are also currently actively pursuing further studies including driving confidence and TS, as well as a tele-CBIT and TS. In our other clinics across the UF Health system, our colleagues are also studying the comorbid conditions related to TS including ADHD, OCD and Autism. We continue to collaborate with those physicians and offer studies to patients as appropriate. Since 2014 with the designation of the CofE, the CMDNR staff has published eight papers on tic disorders. To highlight, two representative publications are listed below: Almedia, L., Martinez-Ramirez, D., Rossi, P., Peng, Z. Gunduz, A. & Okun, M. (2015) Chasing tics in the human brain: development of open, scheduled and closed loop responsive approaches to deep brain stimulation for Tourette Syndrome. Journal of Clinical Neurology; Apr;11(2) ; p. 122-31. doi: 10.3988/ jcn.2015.11.2.122. Darrow, S., Illmann, C., Gauvin, C., Osjecki, L., Egan, C., Greenberg, E., Eckfield, M.., Hirschtritt, M., Mathews, C. (2015). Web-based phenotyping for Tourette Syndrome: Reliability of common co-morbid diagnoses. Psychiatry Research; Aug; 228(3): p. 816-825. doi: 10.1016/j.psychres.2015.05.017.

TRAINING/EDUCATION: Since UF Health CMDNR is an academic university, we continue to be largely active in training of healthcare professionals. We have 2-3 fellows a year that rotate through the TS clinic to increase exposure to TS, and we feel confident they will take this knowledge with them when they transition to their own clinic after their fellowship. At each level (MDs, graduates, undergraduates and rehab professionals with Occupational Therapist), we provide training to the University regarding management of TS and tic disorders. In addition to training for healthcare professionals and students, we strive to provide education to our community. We work closely with the Tourette Association of Florida to provide outreach with the Florida Rotary camp yearly, as well as offer training with the CDC programs through the TAA and OT CBIT training programs.

OUTREACH/ADVOCACY: With the designation of the CofE at CMDNR, we have been able to have a rejuvenation of our local support group which has increased the coverage and support across North Central Florida. We also work closely with the Jacksonville/Duval county support group. Recently we have initiated active engagement in the Tourette Awareness month with activities such as participation in the “virtual 5K” and painting a graffiti wall in town that promotes TS awareness throughout town. In conclusion, we appreciate the support of the TAA with this designation of the CofE. We feel that this partnership has led towards the greater goal and mission of the TAA in making life better for those affected by TS.

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UNIVERSITY OF SOUTH FLORIDA CENTER OF EXCELLENCE ANNUAL REPORT CLINICAL CARE: The Division of Pediatric Neurobehavioral Health, for which Dr. Murphy directs, encompasses 2 child psychiatrists, 1 neurodevelopmental pediatrician, 2 pediatric neurologists, 7 child psychologists and 1 speech-language pathologist. The Rothman Center at the University of South Florida is a specialty clinic that offers a multidisciplinary treatment program for tic disorders (TD), obsessive compulsive disorder (OCD), and anxiety in both children and adults. The clinic sees roughly 100 patients with tics per month with at least 20 of these patients being new to the clinic. As an active part of the Southeastern Center of Excellence, the Rothman Center stays connected with the continuing efforts to improve the treatment of TD and in turn improve the lives of those that are affected by this disorder. Services offered for the treatment of TD at the Rothman Center include the Comprehensive Behavioral Intervention for Tics (CBIT; including Habit Reversal Therapy) and medical evaluations/physician services through our clinic. We have seven doctoral level therapists - Dr. Adam Lewin and Dr. Omar Rahman are both CBIT certified by the Tourette Association of America. Physician services include comprehensive evaluation, pharmacological treatment, and assessment/treatment of youth with PANS/PANDAS. Our team has expertise in treating complex cases with multiple comorbidities– OCD, attention deficit hyperactivity disorder, anxiety, emotional/behavioral dysregulation, rage, and autism spectrum disorder.

RESEARCH: Providers at the USF Rothman Center has been involved in numerous research efforts for the assessment and treatment of TD. Some of our current studies include: Neurocrine Biosciences Inc. T-Forward study and T-FORCE GREEN study: Investigational Medication for Adults and Children and Adolescents with Tourette’s Disorder. The primary purpose of these research studies are to determine the effectiveness, safety, and tolerability of the investigational medication valbenazine for Tourette Disorder, age 18-64 years and 6-17 years. Psyadon Inc. Investigational Medication (Ecopipam) for Children and Adolescents with Tourette’s Disorder. The purpose of this research study is to evaluate ecopipam in children ages 7 to 17 with Tourette’s Disorder. CDC Tic Screener Assessment: The purpose of this study is to develop a screening assessment that is filled out by the parent and child to help clinicians determine whether TD is a diagnosis to consider during evaluation. Auspex/Teva: The purpose of this study is to evaluate the efficacy, safety and tolerability of Deutetrabenazine in children ages 6 to 16 with moderate to severe Tourette’s Disorder. In the past 2 years, our faculty have published 20 papers on the topic of tic disorders. Additionally, there are a number of manuscripts in preparation utilizing data gathered from previous studies and considering topics including the quality of life among children youth with tics and TD, and the effectiveness of guanfacine for the treatment of tics. Dr. Murphy and Dr. Lewin have been in attendance at numerous conferences for TD including the Tourette World Congress meeting in London in 2015, where they presented Rothman Center research.

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TRAINING/EDUCATION: The USF Rothman Center is also dedicated to providing clinical and research training to physicians, psychologists and nurses to expand the network of care for patients with TD. We have 20-30 trainees each year that are experienced in the assessment and treatment of TD, including child psychiatry fellows (5 per year), pediatric residents (10 per year), nurse practitioner students (3 per year), medical students (3 per year), psychology post-doctoral fellows (4-5 per year), and other psychology doctoral students (3-6 per year). Dr. Lewin is a CBIT trainer and Drs. Murphy, Lewin, Rahman, and Storch frequently lecture on the topic of tics at meetings and to trainees.

OUTREACH/ADVOCACY: Aside from treatment efforts at the Rothman Center, the clinicians and staff are involved in TD awareness efforts including the Tee Off for Tourette Charity Golf Tournament, the TAA Fundraiser Walks, and the TS Family Weekend. Rothman Center faculty presented topics related to the treatment of TD at a cognitive behavioral therapy training program for providers sponsored by the International OCD Foundation and a program for patients (Winter 2016), therapists, and families at a local Trichotillomania Learning Center weekend program (Fall 2015). Drs. Murphy, Lewin and Storch are members of the IOCDF Clinical & Scientific Advisory Board. Dr. Murphy is an active member in the PANS Consortium, a multi-disciplinary group working to develop clinical and research protocols for PANS/PANDAS.

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PALMETTO HEALTH - USC MEDICAL GROUP CENTER OF EXCELLENCE ANNUAL REPORT CLINICAL CARE: The University of South Carolina (USC) Center of Excellence is proud to offer comprehensive, multidisciplinary care for patients with Tourette Syndrome and related conditions across a large, academic university setting. On April 1, 2016, Palmetto Health and USC merged systems to form the Palmetto Health-USC Medical Group—the Midlands region’s largest multispecialty, clinically integrated medical group. This merger allows for increased access to quality care for patients and increased resources for the medical community. The USC Center of Excellence program is housed in the Department of Pediatrics (Division of Child Neurology) but is able to evaluate and treat patients of all ages. Within the USC Center, Dr. Rebecca Lehman, a pediatric movement disorder specialist, conducts diagnostic assessments and offers medical management of tics and related conditions, while Dr. Kenneth Phelps, a medical family therapist, provides Comprehensive Behavioral Intervention for Tics (CBIT), Cognitive Behavioral Therapy (CBT), Exposure and Response Prevention (E/RP), and Parent Management Training (PMT) to children, teens, and families. With the Center of Excellence designation and growth of the Tourette program at USC, we have applied for a $39, 000 grant through the University of South Carolina Children’s Hospital Foundation. If awarded, this grant will provide salary support for Dr. Lehman (Center Director), as well as support for a dedicated program coordinator. It will also allow us to offer evening group treatment sessions for disorders that commonly co-occur with TS, such as anxiety and behavioral disorders; to expand our patient education library; to develop an informational video for newly diagnosed patients; and to support Dr. Phelps in seeking certification from the Behavioral Therapy Training Institute (BTTI) of the International OCD Foundation.

RESEARCH: The USC Center is actively participating in the Southeast Center of Excellence RedCap Database project, which aims to create a record-setting database of clinical measures on patients with TS and other Tic Disorders for future studies. USC is also contributing to research in Tourette Syndrome by recruiting patients for studies at other sites within the Southeast Regional Center of Excellence.

TRAINING & EDUCATION: At USC, we continually educate medical professionals on TS and Tics Disorders. We host many 3rd and 4th year medical students, as well as Neurology, Child Psychiatry, Pediatrics, and Psychology residents. We are confident that, when trainees leave our program, that they are comfortable in treating Tic Disorders.

Outreach: USC will be hosting the upcoming Southeast Regional Centers of Excellence meeting in the fall of 2016. This meeting will be held in conjunction with a CDC training program for community providers on the diagnosis and management of Tourette Syndrome. As there are few patient/ family support resources in the area, we are working closely with the Southeast Coordinator to cultivate support group leaders and to assist with the development of a TAA chapter in the state of South Carolina. If awarded the grant from the USC Children’s Hospital Foundation, we also plan to establish a local scholarship program to enable families to travel to the Tourette Association of America National Education and Advocacy Conference.

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University of California LA (Los Angeles, CA) Director: John Piacentini, Ph.D. Co-Director: James McCracken, M.D.

UCLA CENTER OF EXCELLENCE ANNUAL REPORT CLINICAL CARE: The UCLA Center of Excellence provides a full continuum of clinical care through a comprehensive network of clinical services located in the Departments of Psychiatry and Neurology. Core clinical programs include: The UCLA Child OCD, Anxiety and Tic Disorders Program (Dr. Piacentini, Dr. McCracken, Dr. Chang, Dr. Nurmi) provides evaluation and treatment of youth ages 3-20 with tic and related disorders. Services include Comprehensive Behavioral Intervention for Tics (CBIT), medication management,family therapy and support, and diagnostic, treatment planning and school consultation. Evidence-based pharmacologic and behavior therapy is also available, often at no cost, through several ongoing research protocols. Over the past 18 months, we have been able to nearly double our patient capacity through a combination of staffing and structural modifications. The UCLA Movement Disorders Clinic (Dr. Bordelon) is a multidisciplinary program within the Department of Neurology that provides state of the art diagnosis and therapy, including patient education, medications, physical and occupational therapy, for both adult and pediatric patients. The clinic team consists of specialists in adult movement disorders, neurobehavior, neurogenetics, stereotactic neurosurgery, and neurorehabilitation. The UCLA Neuromodulation for Movement Disorders and Pain Program (Dr. Pouratian) in the Department of Neurosurgery offers deep brain stimulation as a surgical alternative to Touretteâ&#x20AC;&#x2122;s patients who are refractory to medication and behavior therapy. Neuropsychological and educational testing for TS and comorbid patients is available through the UCLA Medical Psychology Assessment Center, while inpatient, partial hospital, and intensive outpatient treatment is also available within the Institution.

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RESEARCH: The Center has been highly productive over the past year with at least 12 TS-focused journal articles and chapters published along with several more conference presentations including a poster at the London World Congress. New research funding includes an NIMH R01 (Dr. Loo) investigating the EEG correlates of tic urge, suppression and expression which builds of a successfully-completed NIMH R21 grant, a TAA post-doctoral fellowship grant to Joseph McGuire (Expedited Therapeutic Outcomes for HRT for Youth with Chronic Tic Disorders) and another TAA grant to Dr. Piacentini supporting the 9 year follow-up of the original CBIT sample, and funding from Psyadon to join the multisite pediatric ecopipam for TS trial (McCracken, Piacentini). Additional TS-focused grants currently under review include grants examining impaired extinction learning (McGuire, TAA) and circadian rhythm disturbance (Ricketts, TAA, Brain/Behavior Foundation, Drown Foundation),

TRAINING, EDUCATION, AND AWARENESS: Consistent with the mission of our medical school, education and training is a critical component of our Center. In our child psychiatry clinic, we have trained approximately 20 child psychiatry fellows, 6 adult psychiatry residents, and 10 clinical psychology interns in CBIT since the Center was initiated. Each of these trainees also received supervised practice in the diagnostic evaluation of TS while the medical trainees received training in pharmacological management. Neurology residents and fellows received similar supervised experience in TS evaluation and treament through the Movement Disorders and Neuromodulation clinics. Each of these clinics also hosted a number of medical student and resident observers over the past year. For example, approximately 20 medical students, 5-10 family medicine residents, and 3-5 pediatric neurology residents were able to observe multiple TS clinic visits through the child clinic. Additionally, Center faculty give formal lectures on TS phenomenology, etiology, assessment and treatment each year to trainees in child psychology and psychiatry, adult psychiatry and pediatric neurology. Over the past year, Center faculty have conducted numerous lectures and workshops nationally and internationally, including a CBIT workshop at Cairo (Egypt) University (Chang; Piacentini) and a master clinician workshop at the annual Anxiety and Depression Association of America. In addition, Dr. Piacentini was featured as a TS expert in Fox Sports Documentary, Tim Howard: Uncompromisingâ&#x20AC;? as well as in local CBS TV and CBS radio (San Francisco) features on TS.

OUTREACH AND ADVOCACY: Center faculty are actively involved with the national TAA. Dr. Piacentini co-presented a TAA-IOCDF webinar, provided a CBIT lecture and live case demonstration at the National Education and Advocacy Conference, conducted a CDC-sponsored CBIT workshop in Oregon and will host, along with Dr. Chang, a BTI at UCLA this summer. Drs. Piacentini, Nurmi and other faculty are working closely with Jonah Schnell, President of the Southern California chapter to develop a joint community outreach program and are also planning a local support group to be hosted by UCLA. Dr. Nurmi will be serving as guest expert at an upcoming Rady Hospital (San Diego) Tourette support group and also provides parent education sessions at Camp George, the local TS summer camp, each year.

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COORDINATED CARE FOR TOURETTE & TIC DISORDERS The Tourette Association of America UCLA Center of Excellence (CofE) is home to a multidisciplinary faculty and staff dedicated to increasing the scientific and public understanding of Tourette Syndrome and providing the best possible care for individuals and families living with Tourette Syndrome and related problems. Under the direction of Dr. John Piacentini and Dr. James McCracken, the TAA UCLA CofE provides the highest quality of clinical care, research, education/awareness, and outreach/ advocacy.

SERVICES INCLUDE: • Psychiatry/Psychology • Neurology • Comprehensive Behavioral Intervention for Tics (CBIT) • Neuropsychological and Educational Testing • School Consultation • Deep Brain Stimulation (DBS) • Cutting edge research • Community Education and Outreach • Provider training in TS management and treatment • Tourette Association of America Resources For more information please call 310-825-0122 or visit ticinfo@ucla.edu Director: John Piacentini, Ph.D. Co-Director: James McCracken, M.D.

The Center of Excellence program is part of a larger initiative designed by The Tourette Association of America Center to make life better for all people affected by Tourette and Tic Disorders. Visit tourette.org or call 888-4-TOURET for more information.

tourette.org | 888-4-touret

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The Johns Hopkins Hospital (Baltimore, MD) Director: Harvey Singer, M.D. Co-Director: Marco Grados, M.D.

THE JOHNS HOPKINS HOSPITAL CENTER OF EXCELLENCE ANNUAL REPORT CLINICAL CARE: Johns Hopkins provides interdisciplinary care including access to pediatric and adult neurologists, psychiatrists, and neuropsychologists. Available therapeutic approaches include pharmacotherapy, behavioral therapy (CBIT), botulinum toxin, and deep brain stimulation.

RESEARCH:

Clinical Tic Monitoring: (M. Specht) The goal of this study is the development of an automated computer-based system that detects, classifies, monitors, and provides real-time feedback regarding involuntary movements.

Comorbidities: (M. Grados) Studies are in progress to better understand the clinical characteristics of obsessive-compulsive behaviors and anxiety and their treatment using a breathing biofeedback approach. Treatment Home-based treatment: (H. Singer) We are currently developing a home-based CBIT instructional video and guide and will then compare reductions in tic severity using parent administered therapy to that achieved with traditional face-to-face treatment by an experienced psychologist.

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CBIT (Dr. Specht) Trials include a condensed (two-week) training program and a long term follow-up study of individuals who previously participated in structured CBIT protocols. (TAA supported) Deep Brain Stimulation: (S. Anderson) Pilot study investigating the use of DBS of the medial thalamus.

Drug studies: (H. Singer) Participant in pharmaceutical sponsored protocols.

Pathophysiology 7Tesla imaging: (H Singer) Study is clarifying potential neurochemical alterations of GABA and glutamate in four frontostriatal regions, using 1H MR spectroscopy (MRS) at 7T. (TAA supported) PET: (J. Brasic) Study is quantifying the density and distribution of DA receptors in adults with TS and oromandibular tics before and after a 12 week course of treatment with an oral orthotic appliance.

Sensory processing and inhibitory control of motor output: (S. Mostofsky) A multi-PI NIH grant evaluating the development of TS symptomatology, sensory discrimination and adaptation using motor cortex inhibitory physiology (Transcranial Magnetic Stimulation) and measurement of GABA in sensory motor cortex and supplementary motor areas (Magnetic Resonance Spectroscopy).

Animal model: (H. Singer) This study is investigating biological mechanisms underlying habitual disorders in a mouse model that spontaneously develops high rates of repetitive behaviors (jumping, rearing, and backward flipping).

TRAINING, EDUCATION, AWARENESS: Physicians within the TS Center are active participants in the training and education of medical students, residents, fellows, graduate students, PhD candidates, post-doctoral fellows, and physicians. They have authored numerous original articles and chapters relating to TS. One review, written for the Child Neurology Foundation (H Singer), is the recommended information source for parents.

OUTREACH AND ADVOCACY: Members of the Johns Hopkins CofE have been speakers and at the TAA National Education and Advocacy Conference (H. Singer), the TAA-Greater Washington Annual Meeting (M. Specht), as well as invited speakers at national and international conferences.

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The Tourette Association of America (TAA) has designated The Johns Hopkins Hospital as a Center of Excellence. For more than 30 years, under the leadership of Harvey Singer, M.D., professor of neurology and pediatrics, the Johns Hopkins Tourette’s Center has provided specialized care for children and adults affected with Tourette syndrome. In line with the institution’s tripartite mission of patient care, education and research, the center has also been at the forefront in research contributing to understanding of this disorder and in teaching future health care providers. Clinical Care: The Johns Hopkins Tourette’s Center offers interdisciplinary patient care from leading experts in the fields of pediatric and adult neurology, psychiatry, and neurophysiology. Our team is committed to providing care designed for each patient’s personal needs throughout his or her life by offering comprehensive individualized assessments and therapeutic approaches, including pharmacotherapy, behavioral therapy, botulinum toxin and deep brain stimulation. Research: The center has a long and successful record of clinical and basic science research pertaining to tics and Tourette syndrome. Original research studies have included the investigation of the following aspects of Tourette syndrome: • Clinical characteristics: definition, assessment, outcome, executive and neuromotor functions, behavior and emotional issues, learning difficulties, sleep problems and the visual system • Comorbidities: attention deficit hyperactivity disorder and obsessive-compulsive disorder • Treatments: behavioral and numerous pharmacological trials • Genetics: microarray, polymorphisms, missense variants, and collaboration with national and international whole exome efforts • Autoimmunity: anti-neuronal antibodies and inflammatory markers • Neurobiology, including electrophysiology and anatomy: volumetric, structural and functional imaging • Neurochemistry: positron emission tomography, MR spectroscopy, and studies using postmortem brain tissues, cerebrospinal fluid and blood Education: The educational programs at Johns Hopkins are designed to engage medical students; residents in neurology, psychiatry, pediatrics, internal medicine and psychology; fellows; physicians; and allied health professionals. Members of the center are active participants in TAA’s national organization and the Mid-Atlantic chapter, as well in international meetings. One of our efforts is to develop educational and therapeutic programs that could have global implications.

tourette.org | 888-4-touret

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THE JOHNS HOPKINS HOSPITAL 1800 Orleans St. Baltimore, MD 21287 To request an appointment, call 410-955-4259. To learn more about the Johns Hopkins Touretteâ&#x20AC;&#x2122;s Center, visit www.hopkinsmedicine.org/neuro/tourette. Director: Harvey Singer, M.D. Co-Director: Marco Grados, M.D.

tourette.org | 888-4-touret

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Children’s Mercy Hospital (Kansas City, MO) Director: Keith Coffman, M.D. Co-Director: James Batterson, M.D.

CHILDREN’S MERCY HOSPITAL CENTER OF EXCELLENCE ANNUAL REPORT PATIENT CARE: We continue to expand our services and provide comprehensive care for patients with Tourette Syndrome and other tic disorders. Our Center consists of two child neurologists, two child neurology nurse practitioners, a child and adolescent psychiatrist, an occupational therapist, a pediatric neuropsychologist, a family therapist who dedicates 100% of her time to families affected by tic disorders, a nurse coordinator, and a child neurology nurse. We dedicate a full day each week to seeing patients in our Tourette clinic, beginning with a 30 minute team meeting to discuss patients with complex care needs and to address other issues related to our Center. We have six CBIT-certified providers and offer telemedicine for both clinical care and CBIT. In addition to our local states of Missouri and Kansas, patients have traveled from Pennsylvania, Iowa, Illinois, Arkansas, Oklahoma, Washington and California to be seen at our Center. Last academic year, we saw 857 patients, 358 of whom were new, with only a 6% no-show rate for the entire academic year.

RESEARCH: We are actively building a research program at our Center. We are a site for the Pysadon Pharmaceuticals Ecopipam Trial. We are becoming a site for a trial sponsored by TEVA Pharmaceuticals that will launch this spring. Our Center has been included as part of an NIH U54 grant submitted by our Clinical Pharmacology colleagues for GOLDILOKS: GENOMIC- AND ONTOGENY-LINKED DOSE INDIVIDUALIZATION AND CLINICAL OPTIMIZATION FOR KIDS. This is a precision medicine center that we are formulating at Children’s Mercy Hospital. In collaboration with Clinical Pharmacology at Children’s Mercy and the Hoglund Brain Imaging Center at the University of Kansas, we are looking to determine, in vivo, the brain distribution of fluorine containing medications

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(pimozide, risperidone) used to treat Tourette by employing a custom made 19F head coil and a 9.4T MRI scanner. We are developing a translational study in collaboration with Dr. Marco Bortolato to examine the levels of allopregnanolone in the saliva of controls and patients with Tourette. This work builds upon Dr. Bortolatoâ&#x20AC;&#x2122;s rodent work showing that steroid hormones play a role tic exacerbation and that blocking steroid hormone synthesis can improve tic.

TRAINING AND EDUCATION: Residents and fellows from five programs rotate through our Center, including Pediatrics residents from two programs, Medicine/Pediatrics residents, Child Psychiatry fellows, and Child Neurology fellows. Our Center Director has given Grand Rounds on Tourette Syndrome at four separate academic medical centers since 201W4, and our Co-Director presented Grand Rounds on Tourette this spring. Laura Banning,APRN provided an educational talk on CBIT to neurology and behavioral science nursing staff at a lunch and learn. She and Janelle Gerling, MOTR/L, have given a talk on CBIT and Sensory Integration to our local family support group. We have created a library about Tourette for our clinic staff. Four members of our Center attended the 1st World Conference on Tourette Syndrome and Tic Disorders in London, UK last June.

OUTREACH AND ADVOCACY: Our staff developed a list of classroom accommodations for Tourette to share with our local support group. Sandy Price, RN, MSN, our Nurse Coordinator, has actively engaged our local support group through telephone conversations and by attending their meetings. We supported and attended the first Kansas City Tourette Walk last June, which raised over $11,000. Our Center Director did a radio interview with our local youth ambassador, Jaren Zimmerman on Hot 103 Jamz this winter, and has provided six community outreach talks about Tourette since 2014. We are planning a community outreach talk in July 2016, and preparations are underway for our 2nd annual Tourette Walk. We recently met with Jim Eisenreich of the Jim Eisenreich Foundation to collaborate to improve our Outreach efforts.

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Under the direction of Dr. Keith Coffman and Dr. James Batterson, The Tourette Association of America Children’s Mercy Hospital Center of Excellence (CofE) provides comprehensive care for patients with Tourette Syndrome and tic disorders. OUR DIVERSE AND DEDICATED STAFF CONSISTS OF: • Two Child Neurologists • Two Child Neurology Nurse Practitioners • A Child and Adolescent Psychiatrist • An Occupational Therapist • A Neuropsychologist • A Family Therapist • A Nurse Coordinator and Neurology Nurse

Front Row: Chandra Callow, Sandy Price, Meghan Turner, Laura Banning Back Row: J. Joshua Hall, Bob Batterson, Keith Coffman, Jayme Kagarice, Janelle Gerling Missing from photo: Heather Riordan

THE TAA CHILDREN’S MERCY COFE EXEMPLIFIES THE PROGRAM’S CORE VALUES OF: • Clinical Care – With five providers on staff trained in Cognitive Behavioral Intervention for Tics (CBIT), we ensure that our patients have access to effective treatments. • Research - With Clinical trials both active and in development, the program at Children’s Mercy is on the cutting edge of Tourette research. • Education & Advocacy – In addition to our robust community and distance education programs, the Children’s Mercy CofE staff are frequent collaborators with the TAA for Family and Medical Programs. • Outreach & Advocacy - Through our well-established relationship with local Tourette support groups. APPOINTMENTS All appointments to our clinic are scheduled through physician referrals, which can be faxed to the Children’s Mercy Contact Center at 816-346-1384. Once your referral is received, you will be contacted by our staff to schedule an intake appointment.

tourette.org | 888-4-touret

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Yale Child Study Center (New Haven, CT) Director: Robert King, M.D. Co-Director: Michael Bloch, M.D.

YALE CHILD STUDY CENTER OF EXCELLENCE ANNUAL REPORT The Yale Child Study Center TS/OCD Clinic, now in its 44th year, serves a wide range of children and adults with TS and related disorders, with 115 new evaluations and 669 visits by 219 patients. Some patients and families have maintained their involvement over two generations. Services provided included medication management, comprehensive behavioral intervention for tics (CBIT), cognitive-behavior therapy and parent training for irritability and noncompliance, and E/RP focused cognitive behavioral therapies, individual and family psychotherapy, collaborative assessments conducted with the Yaleâ&#x20AC;&#x2122;s Academic Skills, Anxiety, Developmental Disabilities, and Pediatric Neurology Clinics, and collaboration with schools, juvenile justice, child welfare, and developmental disabilities services. We are collaborating with local families and the TAA central office to revitalize the CT TAA chapter.

RESEARCH: The Yale team continues to work with colleagues in the USA and around the world: (1) to assess and refine severity scales and screening instruments for tics; (2) to study population-based samples in Brazil, Denmark and Sweden to characterize co-occurring conditions, risk factors and heritability within families; and (3) to increase the knowledge base and refine the guidelines for experimental treatments, including deep brain stimulation. Dr. Tom Fernandezâ&#x20AC;&#x2DC; lab continues to lead cutting-edge genetic efforts through the Tourette International Collaborative (TIC) Genetics Study. The lab has performed whole exome sequencing on 325 children with TS and their parents to identify rare genetic variants. We have performed whole genome genotyping on 412 children and their parents to detect copy number variants throughout the genome. These studies are helping to clarify the genetic landscape of TS and point us toward specific

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risk genes that will guide further studies to elucidate underlying neurobiology and treatment targets. We are collaborating closely the TAA-sponsored TSAIGC (Tourette Syndrome Association International Genetics Consortium) to help maximize subject numbers and replicability across study populations. We continue our longstanding direct participation in the TSAIGC, which is now analyzing its large sample of TS probands and families with a focus on identifying heritable phenotypes. We are offering whole exome sequencing in refractory TS cases; this pilot study aims to discover pathogenic genetic variants of large effect that may point toward personalized treatment interventions. Dr. Chris Pittenger’s laboratory is using genetic and post-mortem findings to inform pathophysiological modeling work in mice, in a multi-pronged effort to better characterize how cascading changes in the brain lead to symptomatology and to identify novel targets for pharmacotherapy. Recent work, some of it supported by the TAA, has focused on the brain’s histaminergic modulatory system and on the role of interneuron dysregulation in the development of symptoms. Dr. Flora Vaccarino lab is also focused on pathophysiology. With the support of the TAA, the lab has recently completed a transcriptome analysis of postmortem striatal tissue, identifying a decrease in synaptic transmission and a prominent increase in inflammatory markers. Work is now underway to complete a similar transcriptome analysis of post mortem tissue from the neocortex. The immune signature in the striatum points to the potential role of microglia and neuroinflammation in not only TS but also in other neurodevelopmental disorders. Efforts are also underway to begin disentangling primary and secondary changes in TS using an induced pluripotent stem cell (iPSC) model. Dr. James Leckman’s work focuses on the potential role of dysfunctional neural-immune cross-talk in the pathogenesis of TS, including neuro-inflammation and its interface with neuromodulation. As a member of the scientific advisory board for EMTICS (European Multicentre Tics in Children Studies), he is involved in that group’s active exploration of the role of immune function with regard to the onset, course and treatment of tic disorders. He and Dr. King are also working closely with Susan Swedo at the NIH Clinical Center to understand to potential role of post-infectious autoimmune mechanisms in the pathobiology of TS; an article is currently under review describing a collaborative randomized clinical trial of IVIg in the treatment of putative PANDAS cases (Williams et al., submitted). Work is ongoing in Dr. Pittenger’s laboratory, with support from the TAA, to identify the brain targets of autoantibodies in children who participated in this study.

CLINICAL INTERVENTIONS: The Yale team is also actively involved in studying a number of experimental neuromodulatory interventions for TS including rTMS, DBS, ECT, and neurofeedback. Building on a TAA-funded pilot study, Michelle Hampson and colleagues’ NIH-funded clinical trial is attempting to use fMRI neurofeedback to train control over activity in the supplementary motor area. Our collaborative randomized clinical trial of rTMS (with Columbia University) for TS failed to find it effective for severe adult TS. Dr. Bloch’s lab has emerged as a leader in evidence-based medicine in TS. For example their recently published meta-analysis demonstrated no association between stimulant use and risk of developing or worsening tics in randomized, placebo-controlled trials, addressing a critical practical issue in clinical treatment. Dr. Bloch’s lab also recently published the negative results of a randomized, double-blind, placebo-controlled add-on trial of N-acetylcysteine in the treatment of youngsters with TS. With TAA funding, Bloch and colleagues have been conducting a double-blind, placebo-controlled crossover trial

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of Fatty Acid Amide Hydrolase (FAAH)-inhibitor for the treatment of tics. Several lines of evidence suggest the endogenous cannabinoid system, which modulate neuroinflammation, may be important for the pathogenesis and treatment of tics. Fatty Acid Amide Hydrolase (FAAH)-inhibitors inhibit the degradation of endocannabinoids, but do not have the psychoactive effects or abuse liability of cannabis derivatives. Unfortunately, the FDA recently suspended this trial because of an unexpected severe adverse reactions to another FAAH inhibitor during a phase I trial in France. However, the FAAH compound we were using has been used extensively without serious side effects, and no serious side effects were seen in the 10 subjects who completed our study prior to the FDAâ&#x20AC;&#x2122;s suspension of this trial. In another clinical trial, Tom Fernandez and colleagues at Univ. of South Florida and Mount Sinai completed recruitment for a double-blind clinical trial of extended-release guanfacine (Intuniv) for children and adolescents with tic disorders; data analysis is under way. Building on pilot data provided by a TAA-funded study of CBT for rage outbursts in TS, Dr. Denis Sukhodolsky received an RO1 from the NIMH RDoC initiative for a study of CBT and neural circuitry of irritability and aggression across diagnostic categories, including in children with TS. TRAINING: Our TS clinic team continues to work with trainees in medicine and psychology to introduce them to TS and related disorders. Colleagues from around the world â&#x20AC;&#x201C;this year from Brazil, Denmark, Turkey, and Taiwan frequently come to Yale to learn from the TS team. We sponsor public outreach and educational events; a recent symposium on TS and musical creativity, coordinated by Dr. Pittenger in collaboration with the New Haven Symphony Orchestra, was a great success.

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The Tourette Association of America Yale Child Study Center of Excellence is a pioneering leader in research and experimental therapeutics of TS and related disorders. The Yale Child Study Center also provides education, training, and outreach to increase awareness and knowledge about TS. We provide an integrated service to our patients beginning with comprehensive assessment, and including, as indicated, behavioral therapy; medication management; consultation with schools, pediatricians, and community clinicians; and parent management training. Behavioral interventions include Comprehensive Behavioral Intervention for Tics (CBIT), which we helped to develop; exposure/ response prevention therapy (E/RP) and other forms of CBT for OCD and hair-pulling (Trichotillomania). We also provide psychological and pharmacological treatment for such common co-morbidities as OCD, ADHD, anxiety disorders, and depression. We collaborate closely with the local chapter of the TAA and other patient advocacy groups.

SERVICES OFFERED: • Comprehensive evaluation and treatment • Psychiatric and medication management by child psychiatric experts • School consultation and collaboration • Neuropsychological and Educational Testing • Comprehensive Behavioral Intervention for Tics (CBIT) • Exposure and Response Prevention (E/RP) • Expertise regarding post-infectious and auto-immune syndromes • Cutting edge research

The Tourette Association of America Center of Excellence is located on the campus of Yale University School of Medicine Yale Child Study Center, Yale University School of Medicine 230 South Frontage Road New Haven Connecticut, 06510 To make an appointment for initial evaluation: Call (203)-785-5880 To obtain additional information regarding research studies, contact: Heidi Grantz, LCSW 203-785-5880 Heidi.grantz@yale.edu For further information about clinical, research, and educational activities, also visit our website: www.childstudycenter.yale.edu. CofE Faculty Robert A. King, MD Michael H Bloch, MD Co-Directors James F. Leckman, MD Thomas Fernandez, MD Denis Sukhodolsky, MD Faculty/investigators Heidi Grantz, LCSW, Coordinator/Clinician

• Current TS Information and educational programs tourette.org | 888-4-touret

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CENTER OF EXCELLENCE University Of Utah (Salt Lake City, UT) Director: Michael Himle, Ph.D. Co-Director: Francis Filloux, M.D.

UNIVERSITY OF UTAH CENTER OF EXCELLENCE ANNUAL REPORT OVERVIEW: The University of Utah was designated as a Tourette Association of America Center of Excellence (CofE) in November, 2014. Center activities formally commenced in April 2015.

PERSONNEL UPDATE: Drs. Michael Himle, Ph.D. (psychology) and David Shprecher, D.O. (neurology) served as co-directors on the original CofE application. Eva Tukufu, MSW, was hired as the CofE coordinator in April 2015. Dr. Shprecher reduced his appointment at the University of Utah in October 2016 and is now at Banner Health in Phoenix, AZ. Dr. Loran Schrock, M.D., is now serving as the Interim Chief of Sleep and Movement Disorders. Dr. Schrock has extensive clinical and research experience and expertise with Tourette and other basal-ganglia-thalamocortical circuits. Dr. Fran Fillioux, M.D. (pediatric neurology) agreed to serve as the new CofE co-director. Dr. Filloux is Chief of the Division of Pediatric Neurology at the University of Utah School of Medicine and Primary Childrenâ&#x20AC;&#x2122;s Medical Center. He is also the director for the Pediatric Neurology Residency Program. Dr. Filloux has extensive experience and expertise in tic disorders and Tourettes as well as other developmental neurobehavioral problems. The CofE team also added Dr. Brent Kious, MD, Ph.D., (psychiatry) who works in a transdisciplinary capacity in the Department of Neurology where he focuses on the management of Tourette Syndrome, tic disorders, and comorbidity. Several interdisciplinary community providers (social workers, psychologists, psychiatrists) have also become involved with the CofE.

CLINICAL CARE ACTIVITIES: Tourette Multidisciplinary Clinic days are currently being held twice per month at the Neurology Outpatient Clinic Additional monthly Pediatric Neurology clinic day is

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planned with Dr. Filloux (new center Co-Director) Implementation of billable new diagnoses health education visit with Center Social Worker (Eva Tukufu). This is available to all newly diagnosed families in order to provide a consistent initial CofE point of contact and to plan coordinated interdisciplinary care. The CBIT clinic in the department of psychology has expanded to include 8 new doctoral psychology trainees. The number of families seeking/receiving CBIT at the University of Utah has increased by approximately 30% in the past year.

RESEARCH: A variety of CBIT studies are ongoing, including an NIH-funded multi-site randomized clinical trial examining the efficacy of TicHelper.com, a pilot study to examine a new approach to managing complex comorbidity, and a multi-site study to examine group-delivered CBIT. Two of these studies are collaborations with investigators at other CofE sites. Additional CBIT dissemination grants (NIH) have been submitted and are pending review. Dr. Kious has recently initiated discussions with Teva pharmaceuticals to pursue new clinical trials at the University of Utah. Dr. Marco Bortolato (Recent hire in the Department of Pharmacology & Toxicology) recently presented his research to an interdisciplinary group of scholars at the University of Utah, which led to new collaborations to study stress in TS. Two funding proposals stemming from this collaboration are being planned/prepared. TRAINING & EDUCATION: TAA CofE University of Utah training and education accomplishments: • Neurology Resident rotation during TS Clinic Days. • MSW 2nd Year Training Practicum to begin Aug 2016 (20 hour/week practicum) • A new CBIT practicum was initiated in which 8 doctoral Ph.D. candidates are learning/providing CBIT to children and families (10 hours/week). • Completed training of more than 100 educators across the state regarding educational recommendations for TS children. • At least 2 additional educator trainings are planned and will be completed by Fall 2016 • Social worker advocated at 6 IEP/504 meetings across the state during ‘15-’16 school year. • Successfully appealed for ACT testing accommodations for 2 local adolescents with TS. • Created an outpatient psychotherapy referral list for psychiatric co-morbidities.

OUTREACH & ADVOCACY: • • • •

We have imitated several outreach activities to general pediatricians statewide, including targeted mailings and articles for the Utah Growing Times magazine. A community outreach media campaign was created with local affiliates, and is set to launch during TS awareness month 2016. We hosted our first Education Day Event in 2015 - 55 people attended. Our Education Day 2016 is set for May 2016 with increased outreach to professionals and educators via Utah State Dept. of Education and University School of Medicine

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CENTER OF EXCELLENCE

Created as a partnership between the Department of Psychology, Department of Neurology and the Department of Psychiatry in 2015, the Tourette Association of America Center of Excellence at the University of Utah works to develop relevant, high-quality, interdisciplinary and multidisciplinary care approaches for Tourette Syndrome (TS) and related tic disorders. Our team also seeks to advance research, improve understanding and build awareness about the conditions associated with TS among patients, families, care providers and the general public in Utah and surrounding areas. By seeking to practice and advance the highest standards of care for TS, our team utilizes the expertise of renowned neurologists, neurosurgeons, psychiatrists, neuropsychologists, clinical psychologists, social workers and allied health professionals to create a model for care and research that puts the focus where it should be: on the patient. By partnering with our local Utah TAA Chapter, we are also able to make sure families receive the peer support that they need. Our Center’s focus is on providing services and assistance in all aspects of life that affect our patients, by facilitating conversations between TS individuals & families and doctors, researchers, therapists, educators and employers. Connecting the dots between these team specialists also means that our TS patients are getting the best care possible, by adding expertise from every arena of an individual’s life.

SERVICES OFFERED: CLINICAL CARE: • Neurological evaluation & diagnosis • Psychiatric evaluation & diagnosis • Medication management & botulinum toxin injection • Deep Brain Stimulation (DBS) • Behavioral and psychotherapeutic treatment • New diagnosis Health Education appointments

EDUCATION & OUTREACH: • Annual Education Day for the general public • Provider Trainings • Educator Trainings • 504/IEP Social Work Advocate • Employer Education • Disability Application Assistance

RESEARCH: • Tic Helper • Ongoing CBIT Trials • Clinical Medication Trials • Translation Medicine mouse models and trials

To learn more about the Tourette Association Center of Excellence at the University of Utah call 801-585-1086 or visit www.TSUtah.info. The Center of Excellence program is part of a larger initiative designed by The Tourette Association of America Center to make life better for all people affected by Tourette and Tic Disorders. Visit tourette.org or call 888-4-TOURET for more information.

tourette.org | 888-4-touret

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CENTER OF EXCELLENCE

Icahn School of Medicine at Mount Sinai Part of the New York TAA CofE Consortium Director: Barbara Coffey, M.D. Co-Director: Wayne Goodmand, M.D.

Northwell Health System Part of the New York TAA CofE Consortium Director: Cathy Budman, M.D. Co-Director: Jane Zwilling, Psy.D.

Weill Cornell Medical College Part of the New York TAA CofE Consortium Director: John Walkup, M.D. Co-Director: Shannon Bennett, Ph.D.

University of Rochester Medical Center Part of the New York TAA CofE Consortium Director: Jonathan Mink, M.D., Ph.D. Co-Director: Heather Adams, Ph.D.

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CENTER OF EXCELLENCE TOURETTE ASSOCIATION OF AMERICA (TAA) NEW YORK CENTERS OF EXCELLENCE CONSORTIUM The New York State Centers of Excellence Consortium for Tourette Syndrome consists of four outstanding academic institutions and their affiliated Health Systems across New York State. Each Center includes multi-disciplinary faculty with national and internationally acclaimed expertise in the diagnosis and treatment of Tourette Syndrome and other Tic Disorders, and associated conditions across the lifespan, maintains close ties with its local TAA Chapter, and works collaboratively within the Consortium to promote increased awareness and care for people and families living with Tourette Syndrome / Tic Disorders in New York State. Services offered among the New York State Centers of Excellence Consortium include: • Adult and Pediatric Neurology with expertise in Movement Disorders providing evidence-based treatments, Botulinum Toxin, TMS, DBS • Child, Adolescent and Adult Psychiatry with expertise in complex psychopharmacological treatments of TS / Tic Disorders and psychiatric co-occurring conditions • Psychology including Cognitive Behavioral Therapy (CBIT), Comprehensive Behavioral Intervention for Tics (CBIT), Parenting Skills Training, Neuropsychological and Psycho-educational Testing • Occupational, Physical, and Speech Therapy • Cutting Edge Translational Research • Phases II-IV Clinical Trials for investigative treatments of TS and related disorders in children, adolescents and adults • Training and Education in TS / Tic Disorders and co-occurring conditions for clinicians and educators • Statewide Public Health Education and Advocacy • Close partnership with all Five New York State Chapters of Tourette Association of America • Consultation-Liaison with Schools, Employers, and Health Care Providers • Support groups and social gatherings for the TS community with the NYS Regional Chapters

4 1

1. Icahn School of Medicine at Mount Sinai New York, NY Director: Barbara Coffey, MD, MS Co-Director: Wayne Goodman, MD Coordinator: Maxwell Luber Phone: 212-659-1660 2. Northwell Health Long Island, NY Director: Cathy Budman, MD Co-Director: Jane Zwilling, PsyD Coordinator: Sana Shad, MA Phone: 516-562-3051 3. University of Rochester Rochester, NY Director: Jonathan Mink, MD, PhD Co-Director: Heather Adams, PhD Coordinator: Alyssa Thatcher Phone: 585-275-2808 4. Weill Cornell Medicine New York, NY Director: John Walkup, MD Co-Director: Shannon Bennett, PhD Coordinator: Lucia Haladjian, MA Phone: 212-821-0789

tourette.org | 888-4-touret

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NEW YORK STATE TOURETTE ASSOCIATION CENTERS OF EXCELLENCE CONSORTIUM ANNUAL REPORT NY STATE CENTERS OF EXCELLENCE CONSORTIUM: Four Individual National Tourette Centers of Excellence National Tourette Center of Excellence at Northwell Health Director: Cathy Budman, MD; Co-Director Jane Zwilling, PsyD; Coordinator Sana Shad, MA National Tourette Center of Excellent at Icahn School of Medicine at Mount Sinai Director: Barbara Coffey, MD, MS; Co-Director: Wayne Goodman, MD; Coordinator: Maxwell Luber, B.A. National Tourette Center of Excellence at University of Rochester Director: Jonathan Mink, MD, PhD; Co-Director Heather Adams, PhD; Coordinator: Alyssa Thatcher, B.S.---- National Tourette Center of Excellence at Weill Cornell College of Medicine Director: John Walkup MD, Co-Director Shannon Bennett, PhD Coordinator: Lucia Haladjian

MEETINGS/COMMUNICATIONS: • • • •

Start-up Meeting for New York State Consortium in Bayside, NY (December 16, 2014) Monthly conference calls with Directors and Co-Directors (minutes available) Monthly conference calls with leaders from all five New York State Tourette Association Chapters Inaugural Meeting of New York State CofE Directors/Co-Directors, Program coordinators, Leadership/Representatives from all New York State Regional Chapters, and from TAA (November 13, 2015)

CLINICAL CARE: • • • • • • •

Expertise in Child, Adolescent and Adult Psychiatry, Neurology and Psychology Plan for identification of regional needs and resources Strategy for consultations and second opinion evaluations among sites Preliminary preparations for telemedicine consultations among sites Plan for preparation of state-wide referral lists Initiated cross referrals from LI Chapter adults to NYC Support Group Outreach to primary care providers statewide via CAP-PC (Child and Adolescent PsychiatryPrimary Care)

RESEARCH: • Referrals for research and clinical trials participation among our sites • Preparation of Needs Assessment Survey for New York State • Initial discussion of a multisite research proposal with all four NYS CoEs in collaboration with local chapters

TRAINING, EDUCATION AND OUTREACH: • Medical and Educators’ Conference sponsored by Tourette Association of Greater New York, Buffalo, New York October 17-18, 2014 (Jon Mink, Cathy Budman, Susan Conners)

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• • • • • • •

TS symposium at American Academy of Child and Adolescent Psychiatry (John Walkup, Barbara Coffey, Cathy Budman) Tourette’s and Tic Disorders for Primary Care Clinicians and Educators Conferences in Ithaca, New York November 14, 2015, Medical Conference: 8:00 AM – 1:00 PM; Educators’ Conference: 2:00-5:00 PM Second Annual Medical and Educational Conferences 2016-2017 to be held on Long Island or New York City Participation in TAA-CDC workshops and lectures Participation in TAA Educational Videos Lectures, Panels, and Youth Ambassador program activities at the TAA National Education & Advocacy Conference in Arlington, VA, March 11-13, 2016 (John Walkup, Barbara Coffey, Cathy Budman, Shannon Bennett, Jane Zwilling)

OUTREACH AND ADVOCACY PRELIMINARY REFERRAL LIST FOR PROVIDERS IN UPSTATE NY • • • • • •

Panel Discussion at Presentation of “The Elephant in Every Room I Enter” in NYC Oct 2015 (Barbara Coffey, Cathy Budman, Shannon Bennett, Jane Zwilling, Lil Arbogast) Panel & Discussion Hofstra Northwell School of Medicine, April 7, 2016 (Cathy Budman, Barbara Coffey, Jane Zwilling) Attendance at NY Tourette Association of America Gala in NYC, November 16, 2015 (John Walkup, Barbara Coffey, Cathy Budman, Shannon Bennett, Jane Zwilling (honoree), Sana Shad) Established ongoing communications and collaborations among (5) New York State Chapters with identification of each chapter’s unique strengths and challenges Preliminary identification of New York State target populations and geographic regions for enhanced public health awareness and provider education/training/support Support groups, social engagements, and educational in-service presentations to local schools for the TS community facilitated by the NYS Regional Chapters

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ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI (ISMMS) CENTER OF EXCELLENCE ANNUAL REPORT Together with Centers of Excellence Directors Cathy Budman, M.D., Hofstra/Northwell School of Medicine; Jonathan Mink, M.D., Ph.D., University of Rochester School of Medicine; and John Walkup, M.D., Weill Cornell College of Medicine, an active and productive collaboration has been built over the past 18 months. Through bi-weekly conference calls since July 2014, directors have begun to address CofE goals of provision of outstanding clinical care, innovative research, training and education of students, residents and fellows, and advocacy for patients with Touretteâ&#x20AC;&#x2122;s disorder (TD) and their families in New York State.

CLINICAL CARE: During the past year, an estimated 100 children, adolescents and adults were evaluated for the first time at the ISMMS CofE. Referrals, managed by Clinical Coordinator Natasha Kostek, M.A., were approximately evenly divided from clinicians, parents and the internet. Most frequently recommended treatment modalities were psycho-education, referral to the TAA national office and local chapters, Comprehensive Behavioral Intervention for Tics (CBIT) with Ariz Rojas, Ph.D., pharmacotherapy, and educational modification. Dr. Coffey joined the ISMMS Deep Brain Stimulation (DBS) team headed by Brian Kopell, M.D., Director of Neuromodulation (Neurosurgery), and Steven Frucht, M.D., Movement Disorders Chief (Neurology), to provide consultation for all TD patients who are candidates for DBS.

RESEARCH:Â An active research program with a focus on 1) TD neurobiology/phenomenology, and 2) innovative clinical trials is currently underway: Neurobiology/Phenomenology: a) The Tourette International Collaborative Genetics study (TIC Genetics), an NIMH multi-site collaborative R01 aims to identify genetic factors that cause TD, and b) the Sensory Processing study, (sponsors Wallace Foundation and Seaver Autism Center), a project conducted in collaboration with Teresa Tavassoli, Ph.D. at the Seaver Center, aims to investigate sensory phenomena in children with neurodevelopmental disorders such as TD and autism spectrum disorder. Recently completed studies: Data analysis and manuscript preparation with Vilma Gabbay, M.D.: investigation of inflammation (cytokines) in children and adolescents with TD, and magnetic resonance spectroscopy of GABAergic activity in the striatum and anterior cingulate cortex in adolescents with TD (sponsor TAA). Clinical trials: A Phase 2/3 randomized controlled trial of valbenazine (sponsor Neurocrine) aims to evaluate efficacy and safety of this investigational medication for treatment of tics in adults, children and adolescents. Recently completed clinical trials: Data analysis and manuscript preparation: open label trial of vigabatrin (sponsor Catalyst) in treatment resistant adult patients with TD, and a controlled trial of extended release guanfacine (sponsor Shire) in children and adolescents with TD. Dr. Coffey was invited in November 2015 to serve as Co-Principal Investigator (with Joseph Jancovic, M.D.) and on the Scientific Advisory Board for a Teva sponsored global Phase 2/3 study of efficacy of deutetrabenazine

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in treatment of tics in children and adolescents with TD.

TRAINING, EDUCATION AND AWARENESS: As the recently appointed Director of Training and Education in Child and Adolescent Psychiatry and the Triple Board residency for the newly integrated Mount Sinai Health System, Dr. Coffey has taught, supervised and mentored residents and fellows to provide a unique educational and training experience in TD and related disorders. Blanca GarciaDelgar, M.D., a child and adolescent psychiatrist from Barcelona (Spain), received a grant from the Alicia Koplowitz Foundation in October 2015 to undertake a six-month research fellowship at the Center. To date, Dr. Garcia-Delgar has participated in training in research methodology, clinical trials, and the NIMH TIC Genetics study, and has received specialized training in evaluation, psychological and pharmacological treatments for tics that are not available in Spain.

OUTREACH/ADVOCACY: Closer collaboration with the TAA Manhattan and Hudson-Valley Westchester Chapters (Lil Arbogast, Helene Walisever and Sharon Hammer) was the first step to address the goal of outreach to the greater metropolitan community. Dr. Coffey’s position as Research Psychiatrist at the Nathan Kline Institute for Psychiatric Research in Orangeburg, New York (Rockland County) has facilitated outreach to underserved areas in NYS including Rockland, Orange, Duchess and Sullivan counties. Patients in these counties receive evaluation at no cost as participants in the TIC Genetics study. Dr. Coffey has participated in the TAA-Centers for Disease Control and Prevention sponsored Medical programs in underserved areas: Barnabas Hospital in the Bronx, Brookdale Hospital in Brooklyn, and Administration for Children’s Services (ACD) in the Bronx and Brooklyn.

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WEILL CORNELL MEDICAL COLLEGE CENTER OF EXCELLENCE ANNUAL REPORT The Weill Cornell Medicine/New York Presbyterian Hospital Center of Excellence of the New York State Consortium offers individuals and families expert assessment and treatment for Tic disorders and common comorbidities such as anxiety, ADHD, OCD, and disruptive behavior disorders. Our site provides a continuum of care across the lifespan with nationally and internationally recognized expertise in early childhood, child, adolescent, young adult, adult, and geriatric psychiatry. Weill Cornell faculty are actively engaged in cutting edge research to identify and evaluate novel treatments for Tourette Syndrome. The Weill Cornell Center of Excellence is committed to education, training, outreach and advocacy in the phenomenology, early diagnosis, and evidence based treatment of Tourette Syndrome and co-occurring conditions. Center activities include:

CLINICAL CARE: • Outpatient and acute care clinical settings in Manhattan and Westchester, New York • Care approaches include CBIT, medication management, parent education and training, CBT, DBT, and social skills groups • Care team includes psychiatry, psychology, neurology, social work, occupational therapy, pediatrics • This year our Center sponsored five new clinicians to attend a CBIT training with Dr. Douglas Woods to increase our capacity to offer behavioral therapy for child and adult patents with TS • Consultation, psychoeducation and time limited CBIT provided by psychology in outpatient neurology

RESEARCH: • Completed recruitment for study entitled Dissemination of CBIT to Occupational Therapists • Ongoing recruitment for study entitled Proof of Concept Study of an Oral Orthotic in Reducing Tic • Severity in Youth with Chronic Tic Disorder and Tourette Syndrome • Ongoing recruitment for a clinical trial of Ecopipam for youth with Tourette Syndrome • Ongoing recruitment for a study entitled Acoustinc Neuromodulation for Youth with Anxiety Disorders • Ongoing recruitment for a study entitled A Pilot Test of a Potential Biomarker for Exposure Therapy • Response Across Development in Pediatric Anxiety Disorders • Ongoing recruitment for a study entitled Pilot Trial of a Social Skills Group Treatment for Youth with Anxiety, ADHD or Autistic Disorder

TRAINING AND EDUCATION: • • • •

Advanced psychopharmacology and behavioral therapy is a part of didactic curriculum, case conferences, and supervised clinical care for adult psychiatry residents, child psychiatry fellows, psychology graduate student externs, psychology interns, and psychology post doctoral fellows We provided lectures on tic disorders and direct consultation and training in CBIT to medical students, residents, fellows, and faculty physicians in neurology, pediatrics, and primary care Dr. Bennett gave visiting lectures on Pediatric Tic Disorders and CBIT at Northeastern University and the University of Texas at Austin Dr. Walkup gave a lecture at the American Academy of Child and Adolescent Psychiatry on Tic Related Obsessive Compulsive Disorder

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OUTREACH AND ADVOCACY: • • • • • • • • • • •

Dr. Walkup gave a talk on Tic Disorders and Anxiety at the AACAP Psychopharmacology review in March 2015 Dr. Walkup was a speaker and session chair at the 1st World Congress on Tourette Syndrome and Tic Disorders in London, UK in June 2015 Dr. Walkup attended and spoke at the annual TAA Golf Tournament in September 2015 Psychiatrists and Psychologists from our Center (John Walkup, Shannon Bennett, Justin Mohatt, Susan Samuels, and Michelle Tricamo) attend the Annual Tourette Association of America Gala in Nov 2015 Dr. Walkup gave a WABC7 television segment on TS and the TAA in January 2016 Dr. Walkup gave a full day workshop for families at the Biennial Conference for the Tourette Association of America in March 2016 Dr. Bennett gave an invited talk on TS and Co-occuring disorders at the Biennial Conference for the Tourette Association of America in March 2016 Dr. Bennett is will give an invited talk on treatment and parent training for youth with TS from ages 5 to 25 for the New York Hudson Valley Chapter of the TAA in April 2016 Dr. Bennett will give a training in CBIT at Staten Island Medical Center in May 2016 Dr. Bennett will participate in TAA video project in June 2016 We provide consultation to pediatric specialties (ENT, GI, pulmonology) for increased understanding and identification of tics and assist with appropriate referrals and triage

PARTICIPATION IN NEW YORK STATE CONSORTIUM ACTIVITIES: • • • • • • • • • •

Start-up Planning Meeting for New York State Consortium in Bayside, NY on December 16, 2014 Monthly conference calls with Directors and Regional Chapter leaders Panel Discussion and presentations at AACAP with Drs. Walkup, Coffey, and Budman in Oct 2015 Drs. Bennett, Budman, and Coffey participated in a panel discussion following a performance of “The Elephant in Every Room I Enter” in October 2015 Kick off meeting with Leadership of 5 NY State Regional Chapters and Center Directors and Co-Directors Meeting on November 13, 2015 Provided state wide medical and educational conferences for primary care and community providers on Tic Disorders, Tourette Syndrome and Co-Occuring Conditions on November 14 2015 Preparation of state wide referrals lists Outreach to primary care providers statewide Preparation of needs assessment survey for New York State Ongoing cross site research grant collaboration

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THE UNIVERSITY OF ROCHESTER (UR) CENTER OF EXCELLENCE ANNUAL REPORT Together with Centers of Excellence Directors Cathy Budman, M.D, Hofstra/Northwell School of Medicine; Barbara Coffey, M.D. , Icahn School of Medicine at Mount Sinai; and John Walkup, M.D. Weill Cornell College of Medicine, an active and productive collaboration has been built over the past 18 months. Through bi-weekly conference calls since July 2014, the Centers have worked together to address the individual CoE and Consortium goals of provision of outstanding clinical care, innovative research, training and education of students, residents and fellows, and advocacy for patients with Tourette’s disorder (TD) and their families throughout New York State.

CLINICAL CARE: During the past year, over 250 individuals were evaluated for the first time for Tourette Syndrome or other Tic Disorders. Those patients came from up to 250 miles away, with the bulk coming from the Rochester and Syracuse metropolitan areas. We have maintained an active behavior therapy program (CBIT) for tics as well as multimodal therapy for tics, ADHD, OCD, anxiety, and other associated conditions. One of our center members, Amy Vierhile, PNP, has expanded her telemedicine program in underserved areas in the Finger Lakes Region for ADHD and Tic Disorders. We are in the process of establishing an adult TS clinic.

RESEARCH: We continue to work on data analysis for our recently completed CDC-funded study on the “Impact of Tics”, with several manuscripts in preparation. We are enrolling sites for two trials currently: valbenazine (sponsor: Neurocrine) and deutetrabenazine (sponsor: TEVA). We are preparing a Needs Assessment survey to ascertain the needs of adults with Tourette Syndrome in NY State.

TRAINING, EDUCATION AND AWARENESS: Our center continues to participate in education programs in collaboration with our two affiliated Chapters, the Tourette Association of Rochester and the Finger Lakes and the Tourette Association of Greater New York State. In addition, we organize a ½ day education program for University of Rochester 3rd year medical students focused on Tourette Syndrome and related disorders as part of their Primary Care Clerkship didactic series. We worked with the other members of the New York State Consortium and the New York Tourette Association Chapters to organize an education program in Ithaca, NY in November, 2015. This was highly successful by all measures, and attracted a good number of primary providers from the central NY region, which is currently underserved in terms of Tourette Syndrome expertise/

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NORTHWELL HEALTH CENTER OF EXCELLENCE ANNUAL REPORT Site Description: Multidisciplinary professionals providing exceptional integrated care for TS across the lifespan, conducting clinical research, providing education, training, and advocacy for TS & related conditions to enhance diagnosis, treatment and quality of life for people with TS and their loved ones; longstanding close collaboration with Long Island Tourette Association; founding member New York State Centers of Excellence Consortium for Tourette Syndrome. Medicare, Medicaid, Children’s Health Insurance Plan (CHIP), most private insurance plans, and fee-for-service are accepted. CLINICAL CARE: Broad scope of services to meet needs of diverse people with TS of all ages and at all points of entry. Movement disorders neurologists & neurosurgeons provide comprehensive evaluation, consultation, evidence-based treatments, Botulinum Toxin, TMS, DBS, MRI, PET, SPECT; psychiatric diagnostic evaluation, consultation, and treatments by pediatric and adult psychiatrists with expertise in complex psychopharmacological management of TS; Behavioral Health College Program; psychological diagnostic evaluation and treatments including CBT, CBIT, Parenting Skills Training, neuropsychological, psycho-educational, vocational skills testing; occupational therapy evaluation and treatment; Patient Navigation: screening & triage, patient-centric referrals, regular ongoing support, and contact with patients/families and others; monthly interdepartmental meetings, case presentations/journal club, multispecialty DBS review board, shared AEHR. On average 2 new consultations seen per week; an estimated 126 new patients evaluated and approximately 451 total patients with a tic disorder were seen and treated by CofE in 2015. RESEARCH: Dr. Budman is a member & investigator of the Feinstein Institute for Medical Research; member of the Tourette Association International Consortium for Genetics (TSAICG); member of the Psychiatric Genomics Consortium OCD/TS (PSG); belongs to Tourette Association of America Clinical Trials Consortium; consultant to TEVA for TS studies; collaborates with a number of TS specialists worldwide. Active clinical trials for TS within past 12 months (6): two adult studies, four pediatric studies. Relevant peer-reviewed publications (10); Abstracts/Posters (8); Professional presentations (15) including Grand Rounds, CDC-TAA medical programs, APA, AACAP. TRAINING AND EDUCATION: Electives and research opportunities for summer premedical students, medical students, residents, and fellows available at CofE. Dr. Budman supervises one undergraduate intern, one medical student, three child psychiatry fellows at CofE; In-Service Staff Training for TS provided for Child & Adolescent and Adult Inpatient & Outpatient Services at ZHH, Pediatric Neurology, Child & Adolescent Inpatient & Outpatient Services at South Oaks Hospital, Family Medicine Program at Glen Cove Hospital; organized CDC-TAA CBIT Workshop for Dept. of Psychology at Hofstra University (104 registered) to increase provider workforce, organized & hosted National TSA CBIT Institute at Feinstein Institute for Medical Research; Osler Society TS Event “An Elephant in Every Room I Enter” at Hofstra Northwell School of Medicine co-sponsored by CofE & Dept. of Psychology (124 registered); two TS classes for PGY-2 Psychiatry, four classes for Child Psychiatry Fellows & two 3-hour TS clinical workshops at ZHH; organized Special Educational Law Workshop for Developmental Pediatrics, Pediatric Neurology, Child & Adolescent Psychiatry at ZHH; Master TS workshop for Pediatrics, Psychiatry, Child & Adolescent Psychiatry at Dartmouth School of

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Medicine, Child & Adolescent Psychiatry at ZHH; 1st & 2nd year nursing students at University of Maryland School of Nursing; Bracket instructor on YGTSS and clinical interviewing. COMMUNITY EDUCATION SERVICES: Dr. Budman serves on the Medical Advisory Boards for LI TA and LI CHADD; Dr. Zwilling is the Co-Chairman of LI TA. CofE partners with LI TA to conduct community public health educational events; Drs. Budman and Zwilling presented at National TAA Conference, Arlington, VA; Drs. Budman and Zwilling presented on TS at OCD Awareness week program for ZHH staff & community; Kate Callan, Drs. Zwilling and Budman organized John Halligan to present on “Cyber-bullying, bullying, and depression” for LI TA, staff, and community at Northwell Health; Dr. Budman spoke at CDC-TAA sponsored Family Medical Conference, San Antonio TX; Dr. Budman provided “Update on Clinical Research” for LI TA; Dr. Budman was an invited Speaker for Educator’s Conference sponsored by Greater Western TA, Buffalo NY; Dr. Budman present at Educators’ Meeting at the first NYS CofE Consortium Meeting, Ithaca, NY; Dr. Zwilling and Kate Callan organized College Transition Program with Special Needs advocate Candy Bodner; CofE staff presented lectures to TS community: Parenting Skills, CBT update, Overview OCD, DBS for TS at Dematteis Center and at North Shore Hospital; LI TA collaborated with Twice Exceptional Children’s Advocacy (TECA) workshop at Molloy College, Rockville Centre, NY; Dr. Budman gave webinar “Resilience in Tourette Syndrome” for NJ Center for TS; Dr. Budman to participate in upcoming TAA educational video. OUTREACH, SUPPORT, AND ADVOCACY: Outreach to over 30 public and private schools on Long Island; school in-service programs, Youth Ambassador presentations; CofE Sana Shad participated in (3) Regional Health Fairs with presentations; LI TA Educational Committee coordination member attendance at CSE/IEP, 504 & school staff meetings; 15 currently active Youth Ambassadors; LI TA provides (3) monthly Support Groups (i.e. for children, for teenagers, & for parents/caretakers and siblings/friends); CofE staff attend & supports LI TA Family Funday Fair & Annual TAA Walk; LI TA and CofE collaborate in fundraising and TS awareness with local businesses (e.g. Raymour and Flanigan, London Jewelers, Champions for Charity).

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Massachusetts General Hospital Director: Jeremiah Scharf, M.D.,Ph.D. Co-Director: Sabine Wilhelm, Ph.D.

MASSACHUSETTS GENERAL HOSPITAL ANNUAL REPORT OVERVIEW: The designation of the TAA Center of Excellence at Massachusetts General Hospital in October 2015 recognizes and reinforces longstanding interdisciplinary collaborations between the MGH Departments of Neurology and Psychiatry and the Massachusetts Chapter of the TAA. Led by Drs. Sabine Wilhelm and Jeremiah Scharf, the Center combines the activities of more than 35 clinical staff specializing in the treatment of Tourette Syndrome (TS), tics, and tic-related disorders. In addition to emphasizing excellent patient care, we conduct research aimed at improving TS treatments, education programs for community providers, and outreach to meet patient needs beyond those at our hospital. % of patients receiving each treatment: CBIT/CBT

86%

Medication management

57%

Counseling Botox Injections

15-20% 2.3%

CLINICAL CARE: We serve approximately 400 patients a year, and offer access to a host of interdisciplinary and integrated evidence-based treatments. Patients and families receiving care at the MGH Center first receive a comprehensive diagnostic evaluation, which may include neuropsychological testing. Based on that evaluation, a tailored treatment plan is designed taking into account each patient/familyâ&#x20AC;&#x2122;s personal preferences. Our core treatment options include medication management and/or CBT/CBIT, though in specialized cases, some patients receive Botox, or engage in experimental treatments through one of our clinical trials.

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RESEARCH: Our research activities are focused on identifying underlying disease mechanisms for TS and related disorders as well as developing efficacious treatments; as such, our clinical trials are often additional sources of treatment for our patients. The MGH Center of Excellence has contributed to the empirical development of widely used TS treatments, including behavior therapy (CBIT, HRT), mindfulness-based stress reduction, and pharmacologic treatments for TS. Additionally, our research program takes an integrative, dimensional approach to understanding TS by exploring symptomatology on multiple levels (e.g. cognitive biases, neurological impairment, genetic risk factors). Recent studies include fMRI investigation of the neural correlates of behavior therapy, heritability analyses of alternative TS/OCD phenotypes, and genome-wide studies of common and rare genetic variation.

TRAINING/EDUCATION: MGH is a teaching hospital, and our Center takes the responsibility of training the future generation of TS clinicians and researchers very seriously. We currently have 21 trainees, including interns, residents, coordinators, and fellows. We also regularly provide webinars or online behavior therapy training courses, and Harvard CME courses to train clinicians outside of our Center on TS diagnosis and treatment. Additionally, we are active within national and international conferences, MGH and TS CDC talks and CBIT trainings.

OUTREACH/ADVOCACY: Our close relationship with TAA-MA ensures TS education and outreach not only for our patients, but for the greater Boston community as a whole. Recent outreach activities include the annual International OCD Foundation walk, family-directed publications, and an MGH Family Education Day to give families information about TS, treatment options, and strategies for accessing support through the school systems.

GOALS/NEEDS: With TAA support, we would like to hire a dedicated social worker (Clinic/Advocacy and Outreach Coordinator). This coordinator will facilitate integrated care among Center providers, provide patient/family support, assist in the implementation of Center recommendations in schools, workplaces, and government agencies, and work with the Co-Directors and TAA-MA leadership to organize and promote TS education, outreach, and advocacy programs.

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Baylor College of Medicine Director: Joseph Jankovic, MD Co-Director: Suzanne Mouton-Odum, Ph.D.

BAYLOR COLLEGE OF MEDICINE CENTER OF EXCELLENCE ANNUAL REPORT We were first notified about the designation of Center of Excellence (CofE), awarded by the Tourette Association of America (TAA), in June 2014 but the letter of agreement between TAA and Baylor College of Medicine was not signed until 9/17/2015. While we are honored to accept this prestigious designation, we are disappointed by the lack of funding for our TAA-COE. The clinicians and scientists at the Parkinsonâ&#x20AC;&#x2122;s Disease Center and Movement Disorders Clinic (PDCMDC), founded by Joseph Jankovic, MD in 1977, have published over 1,000 scientific articles, and Dr. Jankovic has authored or edited over 55 books. The PDCMDC database contains records on >32,000 total number of patients (including 3,000 patients with Tourette syndrome), >38,000 unique diagnoses, and >20,000 patient videos. The PDCMDC team, which includes 4 movement disorder neurologists and 4 movement disorders fellows accommodate over 12,000 annual patient visits. In 2015 the PDCMDC moved to the Baylor St. Lukeâ&#x20AC;&#x2122;s Medical Center at the McNair Campus, 7200 Cambridge Street, at the Texas Medical Center, the largest medical center in the world. For further information about the PDCMDC visit www.jankovic.org. This 1-page report briefly highlights some of the activities of the TAA-CofE over the past year. Dr. Mouton-Odum, trained by Dr. Doug Woods, and her team provide behavioral therapy, including Comprehensive Behavioral Intervention for Tics (CBIT) for our TS patients. In addition to the most expert and compassionate patient care, the PDCMDC is currently conducting dozens of clinical trials in various movement disorders, including TS:

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• • • • •

Ecopipam Treatment of Tourette's Syndrome in Subjects 7-17 Years : PSY302 (Psyadon) A pilot study of deutetrabenazine in moderate to severe TS A Randomized, Double-blind, Placebo Controlled Study of TEV-50717 (deutetrabenazine) for the Treatment of Moderate to Severe Tourette Disorder (TEVA) and extension study A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI98854 in Adult Subjects with Tourette Syndrome (Neurocrine) A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome (Neurocrine)

The TAA-CofE has an active outreach program, primarily via partnership with the Tourette Association Texas Chapter (www.tourettetexas.org). Our team, including our fellows, participated in TS Camp du Ballon Rouge (March 4-6, 2016). We are also currently planning a comprehensive CME program for health care professional and educators. Finally, we are grateful to TAA for designing a 2-page handout which we plan to use to promote our TAA-CofE.

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The Tourette Association of America is the premier nationwide organization dedicated to improving the quality of life for those affected by Tourette Syndrome (TS) and related Tic Disorders. The TAA designated the Baylor College of Medicine Parkinson’s Disease Center and Movement Disorders Clinic, founded and directed by Joseph Jankovic, MD, Professor of Neurology and Distinguished Chair in Movement Disorders, as the TAA Center of Excellence (CofE). The TAA-CofE designation is an important honor acknowledging the high standard of care, research, and education provided by the Baylor team, which consists of world renowned movement disorders neurologists, neurosurgeons, nurses, psychologists, and other allied health professionals. In addition to providing the most expert and compassionate care to patients with tics and Tourette syndrome (TS), and associated co-morbidities including attention deficit and obsessive compulsive disorder (OCD), the Baylor TAA-CofE is at the forefront of research and experimental therapeutics of TS and related neurological movement disorders. The Baylor TAA-CofE also provides education, training, and outreach to increase awareness and knowledge about TS. We provide an integrated service to our patients such as Houston Area Behavioral Institute for Tourette (HABIT). This clinic includes licensed psychologists trained to provide cutting edge behavioral treatments that are clinically proven to reduce tic severity and improve attention and control unwanted impulses. The Houston OCD Program delivers evidence-based treatment tailored to the specific needs of individuals struggling with OCD, anxiety disorders, phobias, and depression. We also work closely with the Tourette Association of America -Texas Chapter to advocate for children and adults with TS and to improve their quality of life through socialization at a spring camp and other activities.

SERVICES OFFERED BY THE BAYLOR TAA-CofE: • Neurological evaluation and treatments with medications and botulinum toxin • Psychiatry/Psychology/Neurosurgery • Neuropsychological and Educational Testing • Comprehensive Behavioral Intervention for Tics (CBIT) • Acceptance and Commitment Therapy (ACT) • Exposure and Response Prevention (E/RP) • Deep Brain Stimulation (DBS) • Cutting edge research • Current TS Information and educational programs in TS • TAA educational and other resources tourette.org | 888-4-touret

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The Tourette Association of America Center of Excellence is located in the world’s largest medical center, The Texas Medical Center.

BAYLOR ST. LUKE’S MEDICAL CENTER AT THE MCNAIR CAMPUS 7200 Cambridge, 9th Floor, Suite 9A Houston, Texas, 77030 To make an appointment for initial evaluation: call (713) 798-2273. To obtain additional information regarding research studies, contact: Christine Hunter, RN, BSN (713) 798-3951 chunter@bcm.edu. For further information about clinical, research and educational activities, also visit our website: www.jankovic.org

CofE DIRECTOR Joseph Jankovic, MD, Professor of Neurology and Distinguished Chair in Movement Disorders

tourette.org | 888-4-touret

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The Tourette Association of America is the premier nationwide organization dedicated to improving the quality of life for those affected by Tourette Syndrome and Tic Disorders. All proceeds from the event will fund raising awareness, advancing research and fostering support.

tourette.org | 888-4-touret