Setting the top 10 research priorities for PCOS in the UK

London, UK – Patients, families, and healthcare professionals are being invited to take part in a UK wide survey to help shape the future of research into Polycystic Ovary Syndrome (PCOS), one of the most common endocrine conditions, affecting 1 in 8 women and those assigned female at birth.

The survey is part of a James Lind Alliance Priority Setting Partnership (PSP) for PCOS (https://www.jla.nihr.ac.uk/documents/polycystic-ovary-syndro...), led by UK based PCOS charity Verity (www.verity-pcos.org.uk) and Cardiff University (https://www.cardiff.ac.uk). Funded by The Waterloo Foundation (https://www.waterloofoundation.org.uk), this initiative aims to identify the top 10 unanswered questions about PCOS, ensuring future research focuses on the areas most important to those affected.

The PCOS PSP brings together patients with lived experience, their families, and healthcare professionals to explore the key challenges and uncertainties surrounding PCOS. Whether participants have experienced symptoms such as acne, excess hair growth, or weight management challenges, or faced more complex health outcomes like fertility and metabolic issues, all voices are welcome and wanted.

Aled Rees, Professor in Endocrinology at Cardiff University and Lead on the PCOS PSP explains, “Despite PCOS being a condition that affects so many, research remains underfunded and fragmented. This project provides a unique opportunity for patients, families, and healthcare professionals to come together and shape the direction of future research to address the questions that matter most.”

The PCOS PSP is underpinned by an open-ended survey which asks participants to identify what questions they have about PCOS. It’s quick and easy to complete and is open to anyone in the UK with experience of PCOS, whether personal or professional. Participants can access the survey online at https://www.verity-pcos.org.uk/jlapcos.html.

Rachel Morman, Chair of Verity, said: “This initiative is a vital step towards improving the lives of those living with PCOS. By sharing your experiences, you’ll help ensure that future research addresses the real priorities of the PCOS community.”

The James Lind Alliance is a well-established initiative that brings together patients, carers, and clinicians to identify and prioritize the top questions for research. This ensures that funding and resources are directed towards areas that will have the most significant impact.

Partnered alongside Verity and Cardiff University on the steering group are patient organisations from around the four devolved nations; Cysters (https://cysters.org), PCOS Vitality (https://www.pcosvitality.com), Fair Treatment for Women in Wales (https://www.ftww.org.uk) and the Endo and PCOS Society (https://www.glasgowunisrc.org/organisation/13626). Joining them are individual patients and professionals spanning all the specialties that serve PCOS treatment and management including endocrinology, obstetrics and gynaecology, dietetics, mental health and dermatology. A full list of the steering group members can be found on the PCOS PSP website https://www.verity-pcos.org.uk/jlapcos.html.

The survey, which opens today, and all responses will go through a rigorous categorisation effort resulting in a long list of priorities. These priorities will be taken forward to a follow up survey in Q3 this year where patients, loved ones and clinicians will be asked to select their own priorities from a personal / professional perspective from this list. The end result will be a shortlist of research gaps that are taken forward to a final prioritisation workshop (with both patients and professionals) to agree on the top 10. The results will guide researchers and funding bodies in addressing the areas that matter most to those affected by PCOS.

To take part in the survey and for more information about the PSP, visit https://www.verity-pcos.org.uk/jlapcos.html.

Those interested in following the PCOS PSP can do so via social media with hashtag #JLAPCOS or subscribing to the newsletter via https://www.verity-pcos.org.uk/jlapcos.html.

Spokespeople from any of the steering group organisations or professionals, alongside Verity and Cardiff are available upon request.


For media enquiries, please contact:
Rachel Morman
Chair of Verity
+44 (0) 776 665 1244
rachel@verity-pcos.org.uk


Notes to editors:
Verity is the leading UK charity for Polycystic Ovary Syndrome (PCOS), providing support, information, and advocacy for those affected.
Cardiff University is a world-leading university known for its impactful research and collaboration in health sciences.
The James Lind Alliance (JLA) is a non-profit initiative established in 2004 to address uncertainties about the effects of treatments by prioritizing questions for research.
The Waterloo Foundation is an independent grant-making foundation based in Cardiff, supporting initiatives to address pressing social and environmental issues.