UK’s First National “Top 10” Research Priorities for PCOS Announced — Set by Patients and Professionals Together

23 October 2025, London & Cardiff —- Verity (PCOS UK), Cardiff University and the James Lind Alliance (JLA) have unveiled the UK’s first national Top 10 research priorities for Polycystic Ovary Syndrome (PCOS) — a list shaped directly by people with lived experience, alongside clinicians and researchers, to focus future funding and improve care across the NHS. This is the first UK PSP for PCOS and the first JLA PSP in an endocrine condition of this kind, marking a major step for women’s health research in the UK.

Over 18 months, thousands of questions from the public and professionals were gathered, checked against existing evidence, and prioritised through two national surveys before a final, in-person consensus workshop on 17 October 2025. In total, 523 people submitted 1,339 questions in the first consultation survey, of which 1,318 (98.4%) were within scope, reflecting the breadth of unmet needs in PCOS. A second prioritisation survey drew 374 responses to rank unanswered questions, and the final workshop brought together 13 people with lived experience and 12 healthcare professionals to agree the Top 10 using structured, JLA-facilitated discussions.

Caroline Andrews, Trustee of Verity (PCOS UK), said, “The Top 10 PCOS Research Priorities shows real alignment between future research needs and the recommendations made by the All Party Parliamentary Group (APPG) on PCOS in its recent report on the failings of diagnosis and management of the condition. The priorities echo the Inquiry’s call for clear diagnostic pathways, Women’s Health Hubs, better GP training, attention to mental health, and fair access to treatments. This is a shared agenda for patients, clinicians, researchers and commissioners to deliver together.”

Professor Aled Rees, Cardiff University and PSP Lead, said, “The strength of this work lies in its combination of scale, transparency and genuine co-production. Using established JLA methods, we heard from people across the UK and worked with healthcare professionals from multiple disciplines to agree a ranked list of unanswered questions. These priorities address the evidence gaps that most constrain real-world care—from timely diagnosis and joined-up pathways to mental health and equitable access to effective therapies.”

JLA Advisor Jo Watson added, “Priority setting is at its best when it is transparent, inclusive and follows a rigorous methodology. This partnership brought people with lived experience and clinicians together to identify unanswered questions that are both meaningful and fundable. The resulting Top 10 gives research teams and decision-makers a clear, shared brief for where evidence will have the greatest impact on care.”

The UK Top 10 PCOS Research Priorities

01. What are the optimal care pathways for women and people living with PCOS in the UK, and how can they be adequately resourced and delivered so they are all accessible to everyone with PCOS

02. PCOS is known to be associated with several health conditions (e.g. cardiovascular disease, diabetes, endometrial cancer). What other health conditions are women and people living with PCOS potentially at risk of and why (e.g. fatigue, PMDD, endometriosis as some examples)

03. How can the knowledge and clinical management skills of UK NHS healthcare providers, including GPs, be improved to better meet the needs of people living with PCOS

04. How does a person’s ethnicity affect their experience of seeking a diagnosis and the management of PCOS

05. What is the effectiveness of non-pharmacological therapies (e.g. healthy eating, exercise, psychological and supplement-based approaches) in managing the clinical symptoms of PCOS compared to standard treatments such as the combined oral contraceptive pill and/or metformin

06. How can accessible interventions be designed to effectively address the mental health and psychological needs of women and people with PCOS to support wellbeing and optimise physical health

07. What are the different subtypes of PCOS? How and why do the subtypes affect diagnosis, symptom severity, management and long-term outcomes in women and people living with PCOS

08. What are the effects of anti-obesity drugs on women and people living with PCOS

09. Which strategies and treatments are effective in improving fertility and pregnancy outcomes in women and people living with PCOS, including during early reproductive years

10. What are the effects of anti-androgen therapy on women and people living with PCOS


Contributors reflected the diversity of the UK PCOS community and the breadth of professional expertise — with wide geographic participation across the four nations, ages ranging from 16 to 71 in the first survey, strong representation from minoritised groups, and clinicians spanning endocrinology, gynaecology and fertility, dermatology, dietetics, nursing, psychology and primary care.

Many current recommendations in PCOS care rest on limited evidence. By focusing investment on these priorities, funders and research teams can accelerate the studies most likely to improve real-world care — from clearer diagnostic pathways and better GP training to fairer access to treatments and integrated mental health support. The partnership will now share the findings with major funders, policymakers and research networks, present at conferences and submit for academic publication.

The JLA PSP for PCOS was funded by The Waterloo Foundation with thanks.

Background and method details available on request.

Media contacts
Rachel Morman, Trustee of Verity
rachel@verity-pcos.org.uk


Useful links
Verity’s JLA PCOS website hub www.verity-pcos.org.uk/jlapcos

JLA’s JLA PCOS website hub
https://www.jla.nihr.ac.uk/priority-setting-partnerships/pol...

Webinar Announcement
https://www.verity-pcos.org.uk/webinar-top-10-research-prior...