THE FULL LIST OF UNANSWERED RESEARCH QUESTIONS FOR PCOSHere you’ll find the UK Top 10 PCOS Research Priorities alongside the full set of 27 summary questions that reached the final workshop and the entire 51 summary questions that were formed from the 1300+ submitted topics from the first survey.
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. Together they offer a ready-made blueprint for action: funders can shape targeted calls and portfolio reviews, researchers can design studies, student projects and multicentre collaborations, clinicians can develop audits, service evaluations and quality-improvement pilots, commissioners can test pathway models in Women’s Health Hubs, and charities and professional bodies can use the list to brief policymakers and raise public awareness. Treat this as a shared agenda you can cite in applications, map against existing evidence, and build into study registries and outcome sets — and if your work touches one of these questions, please reference the exact wording so we can track progress and show how new evidence is closing the gaps. |
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The Top 10 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 (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)
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 (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?
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?
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 (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)
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 (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?
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?
The Remaining 17 Shortlisted Research Priorities
The 27 shortlisted research priorities were taken through to the final in-person workshop
11. What is the most effective treatment for hirsutism (i.e. unwanted excess hair growth) for women and people living with PCOS?
12. What is the best way of managing PCOS to optimise the long-term health of women and people living with PCOS?
13. How does PCOS affect overall quality of life, and how can people manage PCOS to minimise any negative impacts on their quality of life?
14. What is the most effective way to lose weight for women and people living with PCOS, and what is the impact of weight loss on long-term health?
15. What are the causes and mechanisms (e.g. genetic, environmental etc.) involved in PCOS?
16. Which are the most effective treatments in managing symptoms for people living with PCOS, who are not seeking pregnancy and/or have a normal range body mass index?
17. Do PCOS symptoms change with age and, if so, how?
18. What is the relationship between PCOS and the menopause, and how does this affect the best treatment options for PCOS and menopause symptoms?
19. What are the most effective lifestyle changes people living with PCOS can make to their behaviour, apart from healthy eating and exercise, to optimise their health and wellbeing?
20. Which treatments are effective in reducing the risk of miscarriage in women and people living with PCOS?
21. For women and people living with PCOS, what would be the advantages or disadvantages of additional screening to identify associated health conditions e.g. cardiovascular conditions, diabetes etc.?
22. Which, if any, dietary supplements are effective in helping to manage symptoms of PCOS?
23. How does PCOS influence and interact with other conditions (cardiovascular conditions or diabetes for example), and what does this mean for treatment pathways for PCOS?
24. What are the long-term effects of medication used to treat the symptoms of PCOS?
25. What are the long-term health effects of having PCOS?
26. What are the reasons it is difficult to lose weight with PCOS?
27. What are the best ways for fertility services to be organised in the UK NHS to improve access and care for people living with PCOS?
The 27 shortlisted research priorities were taken through to the final in-person workshop
11. What is the most effective treatment for hirsutism (i.e. unwanted excess hair growth) for women and people living with PCOS?
12. What is the best way of managing PCOS to optimise the long-term health of women and people living with PCOS?
13. How does PCOS affect overall quality of life, and how can people manage PCOS to minimise any negative impacts on their quality of life?
14. What is the most effective way to lose weight for women and people living with PCOS, and what is the impact of weight loss on long-term health?
15. What are the causes and mechanisms (e.g. genetic, environmental etc.) involved in PCOS?
16. Which are the most effective treatments in managing symptoms for people living with PCOS, who are not seeking pregnancy and/or have a normal range body mass index?
17. Do PCOS symptoms change with age and, if so, how?
18. What is the relationship between PCOS and the menopause, and how does this affect the best treatment options for PCOS and menopause symptoms?
19. What are the most effective lifestyle changes people living with PCOS can make to their behaviour, apart from healthy eating and exercise, to optimise their health and wellbeing?
20. Which treatments are effective in reducing the risk of miscarriage in women and people living with PCOS?
21. For women and people living with PCOS, what would be the advantages or disadvantages of additional screening to identify associated health conditions e.g. cardiovascular conditions, diabetes etc.?
22. Which, if any, dietary supplements are effective in helping to manage symptoms of PCOS?
23. How does PCOS influence and interact with other conditions (cardiovascular conditions or diabetes for example), and what does this mean for treatment pathways for PCOS?
24. What are the long-term effects of medication used to treat the symptoms of PCOS?
25. What are the long-term health effects of having PCOS?
26. What are the reasons it is difficult to lose weight with PCOS?
27. What are the best ways for fertility services to be organised in the UK NHS to improve access and care for people living with PCOS?
The Full 51 Summary Questions
This list was given to survey participants in the second shortlisting survey - and it came from the full 1300+ submitted topics from the first survey. It includes the 27 questions that were taken through to the workshop, including the top 10, and is listed in order of how it was ranked in the shortlisting survey.
This list was given to survey participants in the second shortlisting survey - and it came from the full 1300+ submitted topics from the first survey. It includes the 27 questions that were taken through to the workshop, including the top 10, and is listed in order of how it was ranked in the shortlisting survey.
- 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?
- What is the most effective treatment for hirsutism (i.e. unwanted excess hair growth) for women and people living with PCOS?
- What are the long-term health effects of having PCOS?
- What is the most effective way to lose weight for women and people living with PCOS, and what is the impact of weight loss on long-term health?
- Which are the most effective treatments in managing symptoms for people living with PCOS, who are not seeking pregnancy and/or have a normal range body mass index?
- What are the effects of anti-obesity drugs on women and people living with PCOS?
- What are the most effective lifestyle changes people living with PCOS can make to their behaviour, apart from healthy eating and exercise, to optimise their health and wellbeing?
- 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 causes and mechanisms (e.g. genetic, environmental etc.) involved in PCOS?
- What is the best way of managing PCOS to optimise the long-term health of women and people living with PCOS?
- What is the relationship between PCOS and the menopause, and how does this affect the best treatment options for PCOS and menopause symptoms?
- What are the reasons it is difficult to lose weight 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?
- How does PCOS affect overall quality of life, and how can people manage PCOS to minimise any negative impacts on their quality of life?
- Which, if any, dietary supplements are effective in helping to manage symptoms 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 does PCOS influence and interact with other conditions (cardiovascular conditions or diabetes for example), and what does this mean for treatment pathways for PCOS?
- What are the long-term effects of medication used to treat the symptoms of PCOS?
- For women and people living with PCOS, what would be the advantages or disadvantages of additional screening to identify associated health conditions eg cardiovascular conditions, diabetes etc?
- Do PCOS symptoms change with age and, if so, how?
- 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?
- What are the best ways for fertility services to be organised in the UK NHS to improve access and care for people living with PCOS?
- How can an improved understanding of the causes of PCOS lead to treatments that can cure it?
- What are the effects of anti-androgen therapy on women and people living with PCOS?
- Which treatments are effective in reducing the risk of miscarriage in women and people living with PCOS?
- How can women and people living with PCOS best be supported in the workplace?
- How might changing how PCOS is classified—such as grouping it by different causes or types—help improve how it's treated and the results for women living with it?
- 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?
- How does metformin affect the experiences and symptom management of women and people living with PCOS?
- How does weight stigma affect weight management and other outcomes in women and people living with PCOS and how can it be mitigated?
- How can the diagnosis experience for people in the UK who are living with, or who think they have, PCOS, be improved?
- What are the most effective approaches to managing blood sugars to optimise health and wellbeing for people living with PCOS
- What are the most effective approaches to healthy eating and nutrition to optimise health and wellbeing for women and people living with PCOS?
- To what extent can the risk of PCOS be reduced or prevented via targeted screening and intervention?
- How can knowledge about PCOS be improved in the general population of the UK?
- What are the most effective approaches to exercise to optimise health and wellbeing for women and people living with PCOS?
- What are the health inequalities in the PCOS community in the UK? Eg does where you live, your ethnicity, disability, income etc make a difference to your PCOS care and outcomes?
- Does the approach to managing PCOS change after women and people living with PCOS have had children and why?
- How can partners, family members and friends best support women and people living with PCOS?
- What information about disease characteristics, management options and future risks do people living with PCOS in the UK need to understand and manage the condition?
- What are the personal and financial impacts of living with, and managing the symptoms of PCOS?
- What are the preconception risk factors associated with adverse fertility outcomes in people living with PCOS?
- What are the costs associated with treating or not treating the symptoms of PCOS in the UK?
- How does a person’s ethnicity affect their experience of seeking a diagnosis and the management of PCOS?
- How can the health literacy of adults living with PCOS in the UK (i.e. their knowledge and use of information about PCOS) be improved to ensure the most reliable and up to date information is being accessed and used?
- Does PCOS affect the gender identity of the biologically female and, if so, how?
- What is the quality of online information about PCOS and how could it be improved for use in UK settings?
- What is the prevalence and impact of PCOS in the trans community?
- What is the confirmed prevalence of PCOS in the UK, and can a change in prevalence be attributed to improved diagnosis or other factors?
- What has been the impact of social media on the lived experience of women and people with PCOS?
