A few weeks ago I had the privilege of taking part in the James Lind Alliance priority setting workshop for endometriosis, which took place in London. The aim was to bring together a mix of healthcare professionals, patients, family members, and carers to decide on the top ten questions to be prioritized in future endometriosis research.
It is hoped that this exercise will also attract new funding opportunities for endometriosis research, which is so important considering that endometriosis is hugely underfunded when compared to other conditions.
It was a grueling but fascinating day, and the culmination of a much longer process of consulting with professionals and the public on this topic. I felt so proud to be there representing women with endometriosis, and I made sure I spoke up to reflect my own experiences and that of the women I’ve come into contact with over the years.
The top 10 research priorities have now been published, which you can read below:
This work has also just been published in the medical journal The Lancet (see here), as well as in the popular press (see here) if you want to find out more. You can also find out the full details about the work on the James Lind Alliance endometriosis page (see here), which includes the ranking of the top 30 questions included.
I’d love to hear your thoughts on the final top 10. What do you think is missing and what would be in your top ten?
Love as always,