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Crohn’s & Colitis Foundation updates online research network

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The Crohn’s & Colitis Foundation has updated IBD Partners, its online tool built from a network of more than 15,000 patients designed to help individuals manage their inflammatory bowel disease, according to a press release.

“IBD Partners helps foster greater transparency, community building and patient engagement in the research process, and allows patients to take on the role of citizen scientist,” Michael Kappelman, MD, professor at the University of North Carolina Chapel Hill and principal investigator of IBD Partners said in the release. “With these new features and enhancements, existing patient participants are better able to be active, informed and empowered in both IBD research and their own disease management.”

IBD Partners is a nationwide registry that enables patients with inflammatory bowel disease (IBD) to provide data on how they manage and live with their disease. Investigators can access the data to glean information about people with the disease including diets, treatments and quality of life.

Among the updated features are new health-tracking graphs where patients can input health measures like pain and fatigue and track them on a day-to-day basis. Browsing the information has also been simplified to make it easier for patients to understand published studies, as well as submit their own research ideas, according to the press release.

“IBD Partners has not only given me the opportunity to better manage my own disease, but to also be a part of something bigger,” Jessica Burris, a member of the patient governance committee of IBD Partners, said in the press release. “I had always been curious why many IBD patients can only achieve remission via medication, while some are able to manage their symptoms with dietary changes. I posed the question in the community, which led to the first ever national study of dietary interventions in Crohn’s patients. It’s empowering and gratifying to know that I played a role in research that can help patients like me.”

Disclosures: Healio Gastroenterology and Liver Disease was unable to confirm relevant financial disclosures for Kappelman and Burris at the time of publication.