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Engaging Patients and Caregivers in Research for Pediatric IBD

Top 10 Research Priorities

Grant, Amy*; Crane, Melissa*; Laupacis, Andreas; Griffiths, Anne; Burnett, Dave*; Hood, Amanda§; Kluthe, Cheryl; Maghera, Muneet§; Mann, Malcolm§; Mansi, Melissa§; Murray, Kate§; Trempe, Marie-Josée||; Otley, Anthony*,#

Journal of Pediatric Gastroenterology and Nutrition: May 18, 2019 - Volume Publish Ahead of Print - Issue - p
doi: 10.1097/MPG.0000000000002396
Original Article: PDF Only

Introduction: Including individuals with lived experience in pediatric IBD is essential to establishing a research agenda that is mutually impactful to both those treating and those experiencing the disease.

Methods: Using the James Lind Alliance approach to research priority setting, a 10-member steering committee comprised of current and former pediatric IBD patients, caregivers, and clinicians was formed. A national survey, disseminated across Canada, elicited uncertainties which were divided into unanswered and answered research questions. Subsequently a research prioritization survey was disseminated where respondents ranked their top 20 research uncertainties. A final prioritization meeting was held to agree upon the top 10 uncertainties.

Results: From 1209 research questions submitted by 363 participants, the list was reduced to 105 indicative questions that were within scope and deemed unanswered in the literature. Via the national research prioritization survey, this list was further reduced. The top 10 uncertainties identified at the final research consensus meeting, with 21 participants from all stakeholder groups, included: “What are the causes of IBD?”, “Can IBD be prevented?”, “What role does diet have in the management of pediatric IBD?”. Other questions concerned flare ups, biomarkers, optimal patient education, long-term effects of medication and early-diagnosis, role of psychological support, and optimal approach to diagnosis.

Conclusion: This research adds a unique perspective by deriving a list of pediatric IBD research uncertainties important by patients and caregivers, as well as clinicians.

*Maritime Intestinal Research Alliance (MIRA), IWK Health Centre

St. Michael's Hospital, Toronto; University of Toronto

SickKids Hospital, University of Toronto

§Steering Group Member

Stollery Children's Hospital, University of Alberta

||Montreal Children's Hospital, McGill University Health Centre

#Department of Pediatrics, Dalhousie.

Address correspondence and reprint requests to Anthony Otley, MD, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia CANADA; e-mail:

Received 12 September, 2018

Accepted 30 April, 2019

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (

Disclosures. The sponsors of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,