Can a cure be developed for endometriosis?

Research Priorities in Endometriosis

Key Points

Highlight:

• Prioritizing endometriosis research questions.

Importance:

• Women with endometriosis and health-care practitioners worked together to determine the direction of future research.

What's done here:

• Using online surveys by the participation of 1225 respondents from the UK and Ireland 4767 research questions termed “uncertainties” were submitted.

•  An additional literature search presented 111 research uncertainties. After elimination of questions already addressed in reviews, ongoing research and merging similar questions, the second survey with 72 questions was given to participants to vote the questions.

• In this second round, 1418 participants from the UK and Ireland voted, and the final 30 uncertainties that received the most votes were decided.

• Finally, during the workshop that involved 26 participants was held in London, UK, in April 2017, ten research priorities were agreed to provide a platform for researchers, funding bodies, and the pharmaceutical industry for future endometriosis research funding.

Key Results:

• Top ten research priorities for endometriosis in the UK and Ireland are;

  1 Can a cure be developed for endometriosis? 

  2 What causes endometriosis?

  3 What are the most effective ways of educating health-care professionals throughout the health-care 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 maximizing 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, nonmedical, and self-management methods)?

  8 What are the outcomes and/or success rates for surgical or medical treatments that 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)?

Lay Summary

The Lancet correspondence highlights that regardless of the importance of endometriosis; its full socioeconomic impact is underestimated and endometriosis research is considerably underfunded. The Endometriosis Priority Setting Partnership (PSP) which includes women with endometriosis, their supporters, health-care practitioners, endometriosis researchers, and representatives from organizations related to endometriosis, aims to identify the key questions about endometriosis that were most important to both women with endometriosis and healthcare practitioners involved in their care.

In the first online survey, 1225 respondents from the UK and Ireland participated. Participants submitted 4767 research questions termed “uncertainties.” An additional literature search presented 111 research uncertainties. After filtration of questions already addressed in reviews, or ongoing research and merging similar questions, the second survey with 72 questions was presented to participants to vote the questions.

In the second round, 1418 participants from the UK and Ireland voted for the final 30 uncertainties that received the most votes, and finally, ten research priorities were agreed by 26 participants during the workshop held in London, UK, in April 2017.

These ten priorities will provide a platform for researchers, funding bodies, and the pharmaceutical industry to ensure that future research funding and research activities focus on questions that are important to women with endometriosis and, to health-care practitioners.

Top ten research priorities for endometriosis in the UK and Ireland are whether a cure be developed for endometriosis; the causes of endometriosis; the most effective ways of educating health-care professionals for decreasing the time to diagnosis and improving the treatment and care; development of non-invasive screening tool for diagnosis; effective ways of maximizing fertility; ways to improve the diagnosis; management of emotional and/or psychological impact of the disease; clarifying the outcomes of surgical or medical treatments of curative purposes; ways  to stop progression; and the most effective non-surgical ways of management.

Research Source: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(17)31344-2.pdf