Using an established research process developed by the James Lind Alliance (JLA) in the United Kingdom, our research team sought to identify and prioritize the top 10 unanswered questions related to the causes and management of pediatric inflammatory bowel disease (IBD). At the core of the JLA process, is meaningful engagement of patients, caregivers and health care professionals.
The steering committee brought together patients, caregivers, physicians, allied health professionals, and representatives from relevant national organizations. This collaborative research effort was led by Dr. Anthony Otley, on behalf of the Canadian Children IBD Network: A Joint partnership of CIHR and the CH.I.L.D. Foundation, consisting of 12 pediatric IBD clinics in children’s hospitals across Canada.
A final priority setting workshop was held in Toronto on March 28th, 2017. The workshop consisted of patients, caregivers and clinicians. They were tasked with prioritizing the top 10 unanswered questions about pediatric Inflammatory Bowel Disease they would like the research community to address.
To ensure that the research priorities of people directly impacted by pediatric IBD are identified, and by doing so, to help set the stage for a sustainable patient engagement agenda across the Canadian Children IBD Network to improve research.