SFEBES2026 Poster Presentations Reproductive Endocrinology (14 abstracts)
Research priorities for Polycystic Ovary Syndrome: results of a James Lind Alliance priority setting partnership
Sue Channon 1 , Elinor Coulman 1 , Rachel Morman 2 , Caroline Andrews 2 , Fiona Morgan 2 , Jo Watson 3 , Juliet Hounsome 1 & Aled Rees 1
1Cardiff University, Cardiff, United Kingdom; 2Verity, Oxted, United Kingdom; 3James Lind Alliance, Southampton, United Kingdom
Background: Polycystic Ovary Syndrome (PCOS) is a common endocrine disorder with significant metabolic, reproductive and psychological manifestations. Co-production of research priorities is vital in ensuring that research addresses questions that really matter for people with PCOS as well as healthcare professionals (HCPs). We sought to identify the most important areas for research for people with PCOS by establishing a James Lind Alliance (JLA) Priority Setting Partnership (PSP).
Methods: Using standard JLA methodology, we conducted an online survey to gather research questions from a diverse group of stakeholders. We created summary questions and cross-checked these against existing evidence to identify gaps in the literature. Unanswered questions were included in a second survey for shortlisting by stakeholders. A prioritisation workshop will be held to establish the top 10 research priorities.
Results: The first survey yielded 1339 questions from 523 respondents (434 people with lived experience [3% 16-20 years, 35% 21-30 years, 39% 31-40 years, 15% 41-50 years, 8% >50 years; 79.6% White, 8.9% Asian, 3.5% Mixed or Multiple, 3.5% Black], 84 HCPs, 78 others). We formed 55 summary questions, of which 51 were unanswered and included in the second prioritisation survey (374 respondents; 3452 unanswered questions selected and ranked). The 27 top-ranked questions will be taken to the final workshop, held using modified Delphi and nominal group techniques. The top 10 research priorities will be determined by people with lived experience of PCOS (n = 15) and HCPs (n = 15).
Conclusion: This is the first JLA PSP focused on an endocrine disorder. We identified the most important areas for research for PCOS in the UK, as determined jointly by people with lived experience of PCOS and HCPs. Researchers, funders and policymakers should use these findings to shape the research agenda for PCOS, with the aim of improving meaningful outcomes in this common disorder.
Volume 117
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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