Clinical Research Update: Patient Perspectives

After a year during which COVID-19 restrictions curtailed many aspects of its day-to-day operations, the Kellogg Clinical Research Center (KCRC) is once again humming with activity.

KCRC research coordinators currently manage 54 sponsor-initiated clinical studies involving 15 faculty members. Another 13 studies will begin “within the next year, with three more faculty investigators.

“While we had to do things differently during the pandemic, we never lost our focus on providing exceptional service and support to our investigators and sponsors, and especially to our valued research volunteers,” says KCRC Medical Director Grant Comer, M.D., M.S.

Two recent study participants typify the selflessness and commitment that make research volunteers so special. Both live with rare, genetic eye conditions that cause progressive vision loss; and for which there are no effective treatments.

Brandon Gibbons, 27, began seeing an ophthalmologist close to his home in Florida after being diagnosed at age 13. He and his parents first traveled to the Kellogg Eye Center in 2008. He returned to Kellogg regularly until starting college in 2012.

Curious about any new advances that may have been available, Brandon again traveled from his home in Florida to the Kellogg Eye Center in 2017. During his examination, he learned about a clinical trial and decided to participate.

Gibbons works as an ophthalmic technician, and is studying for a graduate degree in pharmacology. “I’ve always been fascinated by science and research, and I’ve always been impressed with the high degree of professionalism and skill I encounter at Kellogg,” he says. “So stepping up to participate in a clinical study was not a difficult decision for me.”

Clinical Research Coordinator Callie Gordon is Gibbons’ primary contact at the KCRC. “All of our trial participants are terrific, but Brandon was especially engaged and motivated,” she says. “It’s not every day that a patient already ‘speaks our language.’”

Brice Fries, 37, began traveling to Kellogg from his home in northern Ohio in 2011 for annual exams to monitor his condition. He first learned about clinical trial possibilities in letter from Kellogg, notifying him that he met the initial criteria to be considered for a study.

“At first, I didn’t give it much thought,” he admits. “But I came to Kellogg to connect with a leading institution with access to the latest advances, including experimental treatments. My wife and I discussed it and decided to look into it.” KCRC Clinical Research Coordinator Stephanie Wietholter walked Fries through a comprehensive initial screening, and has remained his primary point of contact.

“Because many trials require frequent and lengthy visits, we get to know our volunteers very well,” she says. “That’s one of the best parts of what we do – building relationships with wonderful patients like Brice and their families.”

“From my first trip to Kellogg through my time in the study, everyone has gone out of their way to help and encourage me and my family,” says Fries. “It has made a lasting impression on us.”

Both volunteers know that their participation in these studies will not directly improve their vision. Yet both agree that the experience is one they would recommend to others.

“I knew from the start that this experience is about helping people down the road, not myself,” Brandon Gibbons says. “Of course, I hope I’ll eventually benefit from treatments that come out of clinical research. But in the meantime, I’m glad to play some small role in the process.”

Brice Fries agrees. “Because I had such a high level of trust in my Kellogg care team, I had no reservations about volunteering. It’s especially important for people like us, with conditions that are currently untreatable, to get involved.”