Research priority setting for endometriosis- the top ten questions announced!

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,
Claire
xxx

Can you help to shape future endometriosis research?

Hello lovely endosisters! I hope you are all as well as can be today.

I’m writing this post to update you all about an exciting research project I have had the privilege to help develop over the past year as a member of the Radcliffe Women’s Health Patient Participation Group (University of Oxford). We are hoping to establish a set of core outcomes which can be used in future endometriosis research, which will then make it easier for scientists and healthcare professionals to compare the results of various studies and gain a deeper insight into the disease.

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This post is also a little bit of a call to action and a plea to ask you to take part in this research. Participation involves completing three online surveys over the course of a few months, where you will share your experiences of endometriosis and views on what outcomes doctors and researchers should be prioritising when working to improve the quality of treatments and healthcare we receive.

We have made a short video that explains what we are doing in greater detail:

If you would like more information or to take part, you can visit our sign up page here.

Please do get in touch with me directly if you would like any further information or have any questions. Alternatively, you can contact lead investigator Dr. Martin Hirsch (Queen Mary, University of London) by email: m.hirsch@qmul.ac.uk.

I really am hoping the endometriosis community supports this exciting research opportunity. We can hardly complain that there is a lack of research into endometriosis (which is clearly true and a real injustice when you consider how many people are affected) but then not support the projects when they do take place.

I’d love to hear your thoughts, and whether you’ve been involved in any research projects yourself. Please do share this (on your own blogs and/or social media) with any other endosisters you know who might be interested in taking part- the more voices we have to contribute the better!

With love,
Claire
xxx