We believe people living with IBD are best placed to guide improvements in their treatment. That’s why we’ve been funding the ENIGMA project, which has enabled patients to steer clinical researchers in all aspects of designing a research study. We are extremely proud that the ENIGMA team’s work will be presented at this week’s European Crohn’s and Colitis Organisation (ECCO) Congress, showcasing the amazing potential for patients to lead the way in making crucial advances in care.

The study has been a revolutionary departure from ‘traditional’ research methods, where patient panels have tended to be asked for their input on a study once it has already been designed by specialists.

The ENIGMA study has focussed specifically on improving quality of life for patients with perianal Crohn’s fistula, but we believe the methodology can be applied in other areas of IBD research – such as when surgery or medical treatments should be considered as the best frontline option.

Working hand in hand, the ENIGMA patient panel and specialist researchers have now designed a research project which will give us a truly patient-reported outcome measurement for the treatment of anal fistula, which remains extremely challenging.

The BMJ’s influential GUT publication has also featured an article on the work – which BDRF has paid to be made open access, in order to spread the word as widely as possible. You can read it in full below.

Nevertheless this is only the start, and presentation at the ECCO Congress can now be a springboard for the trial itself to go on and start making real differences in people’s lives.

ENIGMA publication in GUT
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Sahnan K, Tozer PJ, Adegbola SO, et al
Developing a core outcome set for fistulising perianal Crohn’s disease
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