WCE2017: Women with endometriosis drive research priorities

The outcome of a major consultation process, published today in The Lancet, and presented at the 13th World Congress on Endometriosis, has pinpointed ten priorities for future research into the disease.

Results from the James Lind Alliance Priority Setting Partnership, where stakeholders came together to prioritise research in endometriosis, was presented by Professor Andrew Horne at WCE2017 today.

Although endometriosis is as common in women as diabetes and asthma, it fails to attract the same attention, support, and funding as those diseases.

The JLA PSP was launched to identify research questions that are most important to those living with endometriosis and the people that care for them, including healthcare professionals and partners.

It is hoped that the outcomes of the process, which involved surveys, online voting, and a workshop, will help to focus future endometriosis research and drive further investment.

Top 10 identified research priorities

  1. Can a cure be developed for endometriosis?
  2. What causes endometriosis?
  3. What are the most effective ways of educating healthcare professionals throughout the healthcare system resulting in reduced time to diagnosis and improved treatment and care of women with endometriosis?
  4. Is it possible to develop a non-invasive screening tool to aid the diagnosis of endometriosis?
  5. What are the most effective ways of maximising and/or maintaining fertility in women with confirmed or suspected endometriosis?
  6. How can the diagnosis of endometriosis be improved?
  7. What is the most effective way of managing the emotional and/or psychological and/or fatigue impact of living with endometriosis (including medical, non-medical and self-management methods)?
  8. What are the outcomes and/or success rates for surgical or medical treatments which aim to cure or treat endometriosis, rather than manage it?
  9. What is the most effective way of stopping endometriosis progressing and/or spreading to other organs (e.g. after surgery)?
  10. What are the most effective non-surgical ways of managing endometriosis-related pain and/or symptoms (medical/non-medical)?

Project coordinator, Professor Andrew Horne, of the MRC Centre for Reproductive Health at the University of Edinburgh, said:

Professor Andrew Horne
University of Edinburgh

This important project will raise awareness of endometriosis, to accelerate our research efforts, and drive investment into research that matters most to women living with this debilitating condition

This week, as a thousand investigators gather in Vancouver for the 13th World Congress on Endometriosis, we can now present research priorities from the perspectives of those who benefit from the research to ensure alignment of priorities with global research efforts.

We hope this focus will result in more funding for research into understanding endometriosis and caring better for those who suffer from it.

Reference

Horne AW, et al. Top ten research priorities in endometriosis in the UK and Ireland. Lancet 2017 [ePub]

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