A winding road to funding – story of a core outcome set for endometriosis trials

By Dr Martin Hirsch

I was fresh faced and green behind the ears when I first heard about core outcome sets in 2013. Fast forward three years and I have been on a journey getting this, the first core outcome set in benign gynaecology, to the launch of its Delphi survey (Click to register). A shameless plug I know. Endometriosis is a special disease. It is believed to affect up to 10% of reproductive-aged women with associated pelvic pain and subfertility, yet we know so little about it. Our poor understanding of this enigmatic disease has resulted in multi-directional research in the quest for novel treatments. This gold hunt for clinical improvements has resulted in outcome reporting variation which prohibits evidence synthesis and guideline formation hindering advances of patient care.

The International collaborative for Harmonisation of Outcomes and Measures in Endometriosis (iHOME) seemed like the perfect answer. I honestly believed it would be the funders first and obvious choice. A solution to a problem that will improve the usefulness of research to improve patient care. Well, that was my first lesson in research methodology, nothing is guaranteed funding. We have been through multiple failed funding bids, asked if we are a DIY hardware store, and described as the communist research movement of gynaecology. I guess they were all correct. We didn’t deserve funding originally, we have chosen a name akin to home improvement, and core outcome sets are made by the community for the community.

Through hard work and perseverance, my esteemed colleagues and I are launching the Delphi survey with the support of Cochrane Gynaecology and Fertility group. It is immensely rewarding to see this progress closer to a finish line which we hope will mark a positive reform in endometriosis research.

 

 

 

 

 

 

If you want to know how the iHOME COS is progressing follow Dr Hirsch on Twitter 

Posted in Core Outcome Set, Endometriosis, Gynaecology, Researcher Perspective