Research Participation in Inflammatory Bowel Disease Studies: What Do Patients Want?
Bibliographic record
Abstract
Background: We aimed to determine patient perspectives on inflammatory bowel disease (IBD) research participation and potential changes related to the COVID pandemic experience. Methods: 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. Results: 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. Conclusions: 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.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".