Shaping the future of pcos research IN THE UK

Verity (PCOS UK) and Cardiff University / Prifysgol Caerdydd have led a James Lind Alliance Priority Setting Partnership to identify the Top 10 PCOS Research Priorities.

​How the Top 10 was decided
Guided by JLA methodology, the partnership followed a transparent process designed to balance voices and reduce bias.  The key steps taken included:
  • Convening a diverse Steering Group to help shape the project and process
  • National call for unanswered questions about PCOS across patients, families and professionals
  • Summarising the list of 1300+ submissions into 55 summary questions
  • Evidence checking to remove questions already answered in the literature
  • Interim ranking survey to identify the most important uncertainties
  • Final consensus workshop to agree the Top 10
The key principles agreed and held sacred through the entire project included:
  • Equal value placed on lived experience and professional expertise
  • Diversity actively sought across age, ethnicity, geography and clinical disciplines
  • Decisions made in facilitated sessions with clear governance

​Who contributed to to Top 10?
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 with strong representation from minoritised groups, and clinicians spanning endocrinology, gynaecology and fertility, dermatology, dietetics, nursing, psychology and primary care.

Why does this project matter?
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 nuts and bolts
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 at Aston University. In total, 523 people submitted 1,339 questions in the first survey, of which 1,318 (98.4%) were within scope, reflecting the breadth of unmet needs in PCOS. A second 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. 
Pictured: The first Steering Group meeting in September 2024
Explore the JLA PCOS Hub
The Top 10 Research Priorities for PCOS in the UK
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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?
PCOS is known to be associated with several health conditions (eg cardiovascular disease , diabetes, endometrial cancer).  What other health conditions are women and people living with PCOS potentially at risk of and why? (eg, fatigue, PMDD [Premenstrual dysphoric disorder] endometriosis as some examples)
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?
How does a person’s ethnicity affect their experience of seeking a diagnosis and the management of PCOS?
What is the effectiveness of non-pharmacological therapies (eg 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?
​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?
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?
​What are the effects of anti-obesity drugs on women and people living with PCOS?
Which strategies and treatments are effective in improving fertility and pregnancy outcomes in women and people living with PCOS, including during early reproductive years?
​What are the effects of anti-androgen therapy on women and people living with PCOS?
The shortlist Research Priorities - including The Top 10
Here you’ll find the UK Top 10 PCOS Research Priorities alongside the full set of 27 summary questions that reached the final workshop — and we encourage you to read them all because every question reflects a real gap that affects diagnosis, care, equity and lived experience across the life course.