Survey finds 93% of IBD community support predictive testing and prevention strategies

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A new Crohn’s & Colitis Foundation–led survey of more than 1,500 people living with or at risk for inflammatory bowel disease (IBD) found that 93% would be interested in a test to predict their or their family’s risk of developing IBD in the future.

The study, “Patients’ Attitudes to Disease Prevention in Inflammatory Bowel Disease (IBD): A United States based survey,” was published in Crohn’s & Colitis 360.

Almost all respondents were interested in preventive treatment options, with lifestyle interventions (diet, exercise, physical activity) preferred over pharmaceutical approaches, and 59% indicating their willingness would depend on the treatment’s risks, difficulty, and effectiveness. Some 94% reported that, for them or their family to accept a preventive intervention, it should reduce or eliminate disease risk, though many also valued options that could lessen disease severity or delay onset.

A multidisciplinary workgroup of patient advocacy organizations, researchers, and health care professionals partnered with the Crohn’s & Colitis Foundation to adapt an existing European survey to the U.S. context to assess perceived risks and benefits of IBD screening and prevention among people with IBD and those at risk.

The online survey, open to U.S. adults (18+) with IBD, a first-degree relative with IBD, or a child at risk, was disseminated from September through November 2024.

“In this national survey, patients, caregivers, and first-degree relatives expressed a strong willingness to engage in prediction and prevention, aligning closely with emerging scientific evidence that IBD has a detectable preclinical phase,” said Alan Moss, MD, Chief Scientific Officer, Crohn’s & Colitis Foundation, and senior author of the study.

“These findings offer a critical translational signal: if noninvasive tests and prevention strategies—particularly lifestyle-based interventions—are developed and rigorously evaluated, there is a high likelihood they will be acceptable to the very populations at greatest risk for IBD.”

“Importantly, this study shows that patients and families affected by IBD would carefully weigh the risks and benefits of screening and treatment options,” said Mary Harkins-Schwarz, MPH, Senior Director of Health Services Research at the Crohn’s & Colitis Foundation and first author.

“Addressing these concerns with transparency and respect will be essential to building trust and encouraging adoption of new preventive approaches.”

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