# Research Participation in Inflammatory Bowel Disease Studies: What Do Patients Want?

## TL;DR

This study explores what patients with inflammatory bowel disease want from research participation, finding that interest in clinical trials is low but observational research is more appealing, with pandemic effects reducing overall interest.

## Contribution

The study provides novel insights into patient perspectives on IBD research participation, particularly highlighting changes in interest pre- and post-pandemic.

## Key findings

- Two-thirds of patients were unlikely to participate in placebo-controlled clinical trials pre-pandemic.
- About 80% of patients would participate in observational IBD research.
- The pandemic decreased interest in research participation for 20%-30% of patients.

## Abstract

We aimed to determine patient perspectives on inflammatory bowel disease (IBD) research participation and potential changes related to the COVID pandemic experience.

Participants of the population-based University of Manitoba IBD Research Registry were surveyed March 2022 to March 2023. The survey inquired about views on IBD research participation in the pre-, peri- and post-COVID era. Questions included aspects of participation from home or in-person, potential reimbursement, results reporting, and study design. We determined a rank order of reasons for research participation. We assessed willingness to participate in 5 research genres: clinical trials, biospecimen collection research, research involving colonoscopies, research accessing medical records, and research with access to records and samples.

Of 3018 invitees, 1105 (36.6%) completed the survey. Two-thirds reported that pre-pandemic they were unlikely to participate in placebo-controlled clinical trials, and nearly half would participate in a trial if guaranteed to receive active drug. The most important aspect impacting on clinical trial participation was understanding the potential side effects (81%). Post-COVID, 20%-30% reported that their interest in research participation decreased, 15%-20% reported that their interest had increased, with the majority (55%-60%) indicating no change in research participation interest. About 80% would participate in observational research. Payment for participation was not a significant motivator for most.

We found a low rate of interest in participating in placebo-controlled IBD clinical trial research but nearly 50% would participate in clinical trial research receiving active drug and 80% would participate in observational research. Research participation interest, however, was further lessened by the COVID pandemic.