Patients Help Set Course for IBD Research Priorities

The Crohn’s & Colitis Foundation recently announced our new five-year research agenda following a year-long process where we brought together researchers, clinicians, patients, and caregivers to identify the most pressing priorities for the IBD research community. Our research agenda is published in our 2024 Challenges in IBD Research report.

 

At the Foundation, we involve patients in everything we do and ensure their voices are heard. Their input was integral to the development of our research roadmap, and we are grateful for their participation, commitment, and insights.

 

Some of our patient representatives shared with us what the experience has meant to them.

 


Myisha Malone-King croppedMyisha Malone-King, a practicing nurse in Baltimore, Maryland, was a patient advisor on our Pragmatic Clinical Research workgroup looking at how research can use real-world observations to understand IBD. 

 

“This was an exhilarating experience. I never would have imagined I would have been this involved in something so important to patients. It was very exciting to learn about and provide the patient view on research that would one day help the IBD community.

 

“I was able to offer my perspective on barriers to care, especially for people from diverse communities. Between my husband and me, we represent three nationalities. I witness how different people are treated and listened to.”


Since joining our research workgroup, Myisha has become a moderator on our online community forum where people can share stories and ask patients and experts questions about IBD.

 

“I think the experience is also helping me to be a better patient advocate.”

 


Cass CondrayCass Condray, a student at the University of Oklahoma, was diagnosed with ulcerative colitis while in middle school.

 

“Research is important to me. I’ve always been interested in science, and I enjoy reading about and talking about IBD research. I am majoring in microbiology and cell biology, and the idea of serving on a committee with researchers who I’ve seen published was very exciting to me. You could say I was ‘in my zone.’”

 

Cass was one of several patients who served on a research workgroup that focused on looking at the biology and root causes of IBD, referred to as preclinical human IBD mechanisms. 

 

“The most important thing is that I felt heard. I feel like I contributed to something that is important to patients like me.”

 

Following college, Cass plans to go to medical school. “I think having IBD will help me be a good doctor because I can relate to the experience—like knowing what it’s like to be in a lot of pain or having a medication that just stops working. It will make me more empathetic and able to understand my patients.”

 


Deborah LevineA retired physician and radiologist from San Diego, CA, Deborah Levine served on a workgroup focused on developing new technologies, like diagnostic tools and therapeutic devices, to help patients manage their disease. For Deborah, it was a new perspective serving as a patient instead of a doctor.

 

“It was a fantastic experience for me. I’ve always been on the physician side listening to patients. This time I was on the patient side.

 

“As patients, we participated every step of the way. Our input was asked for repeatedly through email and virtual and in-person meetings. I was impressed with how the Foundation made sure that all patients felt comfortable speaking up, especially those who were hesitant at first to speak among a group of researchers. Listening to viewpoints from the people you are most trying to help is absolutely the right way to do things.

 

“Having lived with Crohn’s disease for more than 50 years, I’ve seen incredible changes in the field of IBD treatment. We now have a document that guides the science that can continue to have a huge effect on peoples’ lives.”

 

Patients not only shape our research agenda, they also provide input on our education programs, legislative priorities, and more. To learn how to get involved with the Foundation, visit us here.