BACKGROUND AND AIMS: Perianal Crohn's disease (pCD) is a debilitating condition with a prevalence of approximately 20% in patients within 10 years of diagnosis of CD. The condition significantly impacts patient quality of life, and there remain a number of unmet needs relating to its optimal management. A global Priority Setting Partnership (PSP) was established to identify the top 10 research priorities for pCD. METHODS: The PSP followed standard James Lind Alliance (JLA) methodology. An initial survey was circulated to gather unanswered research questions from key stakeholders. From these responses, a longlist of summary questions was formed. These questions were ranked by stakeholders in a second prioritization survey. The highest ranking 19 questions were taken into the final workshop, where a panel of people with lived or professional experience of pCD identified the top 10 research priorities. RESULTS: Over 1200 individual research questions were submitted by over 400 respondents, from over 30 countries. From the 51 summary questions that were developed from these responses, the top 10 were identified in the final workshop. These included identifying the optimal combined treatment strategy across the full spectrum of pCD, reducing the impact on quality of life, improving timely diagnosis of pCD, identifying a biological classification of pCD, and understanding and managing the impacts on sexual function, intimacy, and relationships. CONCLUSIONS: This global PSP represents a major step towards stakeholder-driven and focused research in pCD. The research priorities provide a roadmap for researchers, funders and policy-makers to align future research with patient and clinician needs to improve outcomes.
Pelly et al. (Wed,) studied this question.