Research Room: Advancing PH Treatment

RESEARCH ROOM

Advancing PH Treatment

AJuly 29 webinar unveiled learnings from six studies conducted at the Pulmonary Hypertension Association (PHA) 2108 International PH Conference and Scientific Sessions.

Doctors shared updates about the studies in the PHA Live webinar “PHA Research Room Findings.” More than 200 patients and healthy subjects participated in Research Room 2018, sharing data and biological samples with 10 research teams. Five clinicians who participated in the 2018 Research Room shared results from their research studies during the webinar.

The webinar began with an update by Paresh Giri, M.D., of Loma Linda University. He led a study that sought to evaluate the effects of study group participation on quality of life. Significantly, 91% of the 165 people surveyed said that support group participation helped them.

Equally impressive, results showed that study group participation led to higher confidence in self-care, more medication compliance and better understanding of disease process. Not surprisingly, the study found that the farther patients and caregivers had to travel to their pulmonary hypertension (PH) physicians, the lower their quality of life.

Next steps: The research team plans to assess which elements of PH support groups are helpful and design a new curriculum that could led to beneficial outcomes.

Photo: Kathleen Sheffer.

INCREASING EXERCISE REHAB REFERRALS Another study, led by cardiologist Thomas Cascino, M.D., M.Sc., University of Michigan, examined barriers to exercise rehab referrals.

The team surveyed 65 people, about half of whom had been referred to cardiac or pulmonary rehabilitation. Those without a doctor’s referral for exercise rehab reported greater barriers related to cost, distance and other factors. The barriers greatly increased as the perceived need to exercise decreased.

The study can help doctors understand perceived barriers, leading to increased referrals and ideally better outcomes for the PH community. If patients and providers know about the benefits of rehab, use of exercise programs may increase, Cascino said.

PH RISK STRATIFICATION A study led by Ray Benza, M.D., FACC, FAHA, FACP, The Ohio State University, asked patients to assess the importance and relevance of risk-assessment tools to guide care and treatment.

The study showed potential for a PH-specific risk-assessment tool that can help inform and educate patients, as well as involve them in critical decisions about their care. The data helped the researchers secure NIH funding to design a highly accurate risk stratification model, which features multiple variables to assess patients and shows how combinations of factors can affect patient outcomes.

Above: Research Room participants share blood samples at PHA 2018 International PH Conference and Scientific Sessions.

PROTEINS UNDER THE MICROSCOPE A research team led by Paul Yu, M.D., of Harvard Medical School, sought to identify new pulmonary arterial hypertension (PAH) biomarkers that correspond with disease severity and/or PAH causes. The 2018 study built on the previous PHA Research Room studies about PH biomarkers by Dr. Yu and his colleagues. Ideally, the biomarkers would lead to quicker, more precise diagnosis and more effective treatment.

For this study, more than 200 PHA Conference participants donated blood to help researchers examine as many proteins as possible.

At this stage, the researchers are trying to identify proteins and genes that could indicate disease severity or causes or could predict treatment response. The biomarkers could be important for identifying specific patient populations who might respond to specific treatments. The work also could support future trials.

NIH STUDIES Michael Solomon, M.D., MBA, of the National Heart, Lung and Blood Institute at the National Institutes of Health, discussed two studies.

One clinical trial, SPIRIT-PAH, looked at the effect of spironolactone on six-minute walk distance and on the clinical progression of PAH. Spironolactone is a diuretic traditionally used to treat high blood pressure, heart failure and liver disease. This study examined its antiinflammatory characteristics.

The study detected abnormal inflammatory responses in the blood of people with PAH. Lab evidence suggests the medication could reduce the inflammatory response.

Solomon also discussed a clinical trial call Natural-PAH, which is evaluating novel new biomarkers and imaging techniques that could give insight into the pathophysiology of PAH.

If you missed the webinar, you can view it at PHAssociation.org/ portfolio-items/pha-researchroom-findings.

PHA 2022: PHacing the Future Together

The theme for the Pulmonary Hypertension Association PHA 2022 International PH Conference and Scientific Sessions is “PHacing the Future Together.”

Tina Barley of Hamilton, Alabama, submitted the winning theme. Her idea was chosen from more than 100 ideas from more than 80 people. PHA 2022 is set for June 10-12, 2022, in Atlanta.

Tina’s daughter Caitlin and their experience at PHA 2008 in Houston, Texas, inspired her theme. Caitlin had pulmonary hypertension (PH) for five years before she died in 2010. She was 15.

“I was so glad she was able to go to the Conference,” Tina says. “We felt so alone and so disconnected before we went. We met so many people there and it gave us so much hope.”

Soon after Caitlin’s passing, Tina connected with a fellow PH mom in a parent chat. The woman’s daughter Shaye Wallace was the same age as Caitlin when she was diagnosed. Tina says they just clicked, and Shaye was meant to come into their life for a reason.

Tina and her family keep in touch with Shaye, who turned 21 this year, and have visited her in Houston. Tina plans to give her contest winnings, which include a $25 Amazon gift card, a one-year PHA membership and PHA swag, to Shaye. “We’re in this together. You need that community of hope and support to get you going,” Tina says.

PHA stakeholders chose “PHacing the Future Together” as the winning contest entry because of its message of unity after the pandemic. The PHA 2022 theme will be featured on PHA’s website, in email campaigns, social media, the program book and onsite signage.

Caitlin Barley