Passion and experience to drive perianal fistula research agenda

Outcomes researchers should look for when designing projects to tackle perianal Crohn’s were agreed on a day of illuminating discussion between patients and clinicians at the Royal College of Surgeons in London yesterday. The room was full of energy and passion, with many eye-opening contributions that will define the medical approach to this issue.

BDRF’s ENIGMA project, developed alongside the ACPGBI and British Society for Gastroenterology, aims to agree a core set of guiding principles for clinicians developing studies on the management of this complex problem.

Perianal Crohn’s fistulae are very difficult to manage, with huge impacts on the daily lives of people who have them. Progress in improving treatment has been slow, in large part because research studies have been unable to define what it is they are trying to achieve and how they will measure a successful outcome. The problem has been further compounded by the fact patients often define a successful treatment differently to the way clinicians do, a significant and frustrating blind spot.

All that is about to change, after patients and clinicians voted together on a series of quality of life measurements to decide which would make the final cut.

We now have a core outcomes set which takes into account the full impact of fistula on people’s daily lives, and these will form the foundation for a number of future trials going forward.