P0785 Protocol for a Priority Setting Partnership to identify the top 10 global research priorities for perianal Crohn’s disease
Authors: Pelly T ,   Perianal Crohn's Disease Priority Setting Partnership Steering Group
Published: January 2025

Background

Perianal Crohn’s disease (pCD) occurs in around 18.7% of patients with Crohn’s disease (1). This manifestation is associated with significant morbidity and impact on the quality of life of affected patients, as well as high healthcare resource utilisation and costs (2). Perianal Crohn’s disease often requires prolonged treatment and multiple interventions. Options for treatments and their efficacy, impact on QoL, use of setons, stomas and proctectomy need further investigation to establish optimal methods (3). A collaborative and patient-centred process is required to prioritise research questions so that limited funding resources can be more efficiently directed to the areas where it is needed most.

Methods

A priority setting partnership (PSP) with the James Lind Alliance (JLA) has been established in order to identify the “Top 10” most important global research priorities in pCD. The project will follow standard JLA methodology and collaborative principles. An international steering group has been formed, with representation from colorectal surgeons, gastroenterologists, radiologists, researchers, nurses, and patient experts. An initial survey will be distributed over several months to key stakeholders globally, in order to gather “unanswered research questions” relating to pCD, which will then be checked against the evidence base. A prioritisation exercise will be carried out to create a shortlist of research questions, which will be taken to a final consensus workshop involving patients, carers and healthcare professionals to identify the top 10 research priorities.

Results

There have been 200 responses to the initial survey in the first 4 weeks. 66% of responses were from healthcare professionals, 31% responses from patients, parents or carers, and 3% from other sources. Responses have been received from 27 countries globally, with 27% of responses from the UK, 21% from Brazil, 10% from Iran, 7% from Belgium, 5% from the Netherlands, 5% from the USA, 4% from Colombia, and 21% from a range of other countries. Responses thus far include a diverse range of questions relating to the causes, assessment, treatment and prognosis of pCD, as well as its impact on quality of life.

The final top 10 research priorities will be established in the final workshop, and disseminated globally to better inform the development of research questions for basic science and clinical research.

Conclusion

This project will provide an opportunity for all key global stakeholders, including underrepresented end-users to collaborate and contribute to research prioritisation in pCD. Engagement in the initial survey and this process will aim to shape the future research agenda in perianal Crohn’s disease.

References

1.Tsai L, McCurdy JD, Ma C, Jairath V, Singh S. Epidemiology and natural history of perianal Crohn’s disease: a systematic review and meta-analysis of population-based cohorts. Inflammatory Bowel Diseases. 2022 Oct 1;28(10):1477-84.

2.McCurdy JD, Chen JH, Golden S, Kukaswadia A, Sarah Power G, Ward R, Targownik LE. Perianal fistulas are associated with persistently higher direct health care costs in Crohn’s disease: a population-based study. Digestive Diseases and Sciences. 2023 Dec;68(12):4350-9.

3.Adegbola SO, Pisani A, Sahnan K, Tozer P, Ellul P, Warusavitarne J. Medical and surgical management of perianal Crohn’s disease. Annals of gastroenterology. 2018 Mar;31(2):129.