IBD Researchers and Patients Focus on Foundation’s IBD Research Priorities

With nearly 1 in 100 Americans living with inflammatory bowel disease (IBD), advancing discovery into treatments and cures is critical to improving patients’ quality of life.

Last week, the Crohn’s & Colitis Foundation brought together more than 100 IBD researchers and patients to share current Foundation-supported research on IBD and provide input into our research funding priorities for the next five years.

Our five-year research agenda is titled “Challenges in IBD Research” because our funding goals are driven by identifying unmet patient needs, which present opportunities for future research and/or funding.

The Foundation currently funds more than 200 studies by scientists across the globe. Research on IBD can be complex as scientists investigate the wide array of causes, including genetics, environmental triggers, the gut microbiome (the microbes in your intestines), and the body’s immune response.

Patient input is key to the development of our research agenda. Our patient review process helps us ensure that the most promising and relevant projects and grant applications are funded. Patients serve on our Challenges in IBD workgroups and use their experience to tell us what research means to those living with the debilitating disease.

“Researchers need to hear from the patients about what really matters to us,” said patient Eugene Lisansky.

Myisha Malone-King was diagnosed with Crohn’s disease in 2009. “It’s amazing to be a part of the research community. They always take my questions and answers into consideration. I feel heard and seen.”

For two days, Foundation-funded researchers shared their progress and engaged in discussion with patients and each other on where the gaps still exist in our key focus areas, including: 

•    Understanding the biological basis of IBD.
•    Determining the role of environmental triggers, such as stress, smoking, and diet and nutrition in IBD. 
•    Tailoring a patient’s treatment based on their specific clinical and biological characteristics (referred to as precision or personalized medicine).
•    Developing novel technologies, such as biosensors and implantable devices, to address patients’ unmet needs.
•    Using real-world observations to understand the disease. For instance, clinicians often collect data during routine appointments with the patients who have agreed to participate in the study. 

Presentation highlights included:

•    Keynote speaker Jean-Frederic Colombel, MD, of the Icahn School of Medicine at Mount Sinai, provided accumulating evidence suggesting that IBD may one day be predicted years before symptom onset.
•    Emeran A. Mayer, MD, of the University of California, shared his recent findings on IBD and psychological stress, which identified biomarkers that predict which ulcerative colitis patients will experience a flare in response to high levels of stress.  
•    Laura E. Bauman, MD, of the University of California, San Diego School of Medicine and Rady Children’s Hospital, uncovered healthcare and health disparities among Hispanic patients in California where the odds of hospital admission for Hispanic pediatric and young adult patients after an ER visit are 22% higher.
•    Shalini Prasad, PhD, of the University of Texas, reported on the development of a wearable sensor that monitors biomarkers of inflammation in a patient’s sweat.
•    Shaoing Nikki Lee, PhD, with Biora Therapeutics, presented her team’s work on an ingestible capsule that delivers medicine directly to affected areas of the intestine.

“It’s fascinating to be with so many researchers in one room working on this disease and approaching it in different ways,” said patient Denise Elsbree Smith, whose mother, two brothers, and two daughters also have IBD. “I’m putting a face on what you are working on and how it impacts me and my family,” she told everyone.

Researchers and patients discussed research gaps in the context of how to arrest or prevent the disease prior to symptoms (interception), restore the patient’s function (restoration) once the disease is diagnosed, and prevent disease recurrence and progression (remission). Patients provided their perspectives on what restoration and remission can mean to different patients and the importance of prioritizing the idea of “quality of life.”

Advancements have been made in the area of biomarkers across the Foundation’s focus areas, and discussions noted the need for continued focus on identifying biomarkers to help predict disease course or whether patients will respond well to surgery or medication.

Throughout their discussions, participants acknowledged the importance of collaboration among researchers and expanding the IBD patient research base to include understudied groups, such as those from different geographic and ethnic backgrounds.

“It was a vibrant conference with so much comment and feedback,” said research fellow Felix Chuan. “It was wonderful to have the patient voice in a scientific conference. It is usually missing. That is what makes it really unique.”

The Foundation’s new “Challenges in IBD Research” will be published in 2024.

You can make an impact on IBD cures! Please consider making a donation to the Crohn’s & Colitis Foundation.