Harmonizing research outcomes for polystic ovary syndrome (HARP), a marathon not a sprint: current challenges and future research need

被引：8

作者：

Al Wattar, Bassel H. ^{[1
,2
]}

Bueno, Aurora ^{[3
,4
,5
]}

Martin, Miguel Garcia ^{[3
,4
,5
]}

Ibanez, Naomi Cano ^{[3
,4
,5
]}

Harasani, Klejda ^{[6
]}

Garad, Rhonda ^{[7
,8
]}

Franks, Steve ^{[9
]}

Balen, Adam ^{[10
]}

Bhide, Priya ^{[11
,12
]}

Piltonen, Terhi ^{[13
]}

Romualdi, Daniela ^{[14
,15
]}

Laven, Joop ^{[16
]}

Moss, Ngawai ^{[12
]}

Andrews, Caroline ^{[17
]}

Hawkes, Rachel ^{[17
]}

Mol, Ben W. ^{[18
,19
]}

Teede, Helena ^{[7
,8
]}

Thangaratinam, Shakila ^{[20
]}

Khan, Khalid Saeed ^{[3
]}

机构：

[1] Univ Warwick, Warwick Med Sch, Coventry, W Midlands, England

[2] Univ Coll London Hosp, Inst Womens Hlth, Reprod Med Unit, London, England

[3] Univ Granada, Dept Prevent Med & Publ Hlth, Granada, Spain

[4] Consortium Biomed Res Epidemiol & Publ Hlth CIBER, Madrid, Spain

[5] Inst Invest Biosanit Ibs GRANADA, Granada, Spain

[6] Univ Med Tirana, Dept Pharm, Tirana, Albania

[7] Monash Univ Melbourne, Monash Ctr Hlth Res & Implementat, Natl Hlth & Med Res Council Ctr Res Excellence PC, Melbourne, Vic, Australia

[8] Monash Univ, Monash Ctr Hlth Res & Implementat, Sch Publ Hlth, Clayton, Vic, Australia

[9] Imperial Coll, Hammersmith Hosp, Inst Reprod & Dev Biol, Sch Med, London, England

[10] Leeds Teaching Hosp NHS Trust, Seacroft Hosp, Leeds Fertil, Leeds, W Yorkshire, England

[11] Homerton Univ Hosp NHS Fdn Trust, London, England

[12] Queen Mary Univ London, Barts Res Ctr Womens Hlth BARC, Barts & London Sch Med & Dent, Womens Hlth Res Unit, London, England

[13] Univ Oulu, Oulu Univ Hosp, Med Res Ctr, Dept Obstet & Gynecol,PEDEGO Res Unit, Oulu, Finland

[14] Fdn Policlin Univ A Gemelli IRCCS, Dept Womens & Childrens Hlth, Rome, Italy

[15] Azienda Osped Card Panico, Dept Woman & Child Hlth, Tricase, Italy

[16] Erasmus MC, Dept Obstet & Gynecol, Div Reprod Endocrinol & Infertil, Rotterdam, Netherlands

[17] Verity, Surry, England

[18] Monash Univ, Dept Obstet & Gynaecol, Melbourne, Vic, Australia

[19] Univ Aberdeen, Aberdeen Ctr Womens Hlth Res, Aberdeen, Scotland

[20] Univ Birmingham, Inst Metab & Syst Res, Birmingham, W Midlands, England

来源：

HUMAN REPRODUCTION | 2021年 / 36卷 / 03期

基金：

澳大利亚国家健康与医学研究理事会;

关键词：

polycystic ovary syndrome; stakeholder; core outcomes; reporting; big data; public involvement; DIAGNOSTIC-CRITERIA; HEALTH RESEARCH; BIG DATA; STRATEGIES; PHYSICIANS; INNOVATION; STATEMENT; WOMEN; PCOS; CARE;

D O I：

10.1093/humrep/deaa331

中图分类号：

R71 [妇产科学];

学科分类号：

100211 ;

摘要：

Investing in clinical research and evidence-based medicine has helped to improve the care for women with polycystic ovary syndrome (PCOS). However, several important questions remain unanswered on the optimal prevention and management strategies for PCOS. Addressing this uncertainty is often hindered by suboptimal research conduct leading to inefficient evidence synthesis and research wastage. PCOS research is often practised by varied specialized teams in silo leading to disharmonious and fragmented efforts neglecting the lifelong impact of PCOS on women's wellbeing. Poor engagement among key stakeholders and lay consumers continues to limit the impact and benefits of research to society. Selective reporting on surrogate outcomes with a 'significant' P-value is a common malpractice in PCOS outputs. Effective adoption of the harmonizing research outcomes for PCOS (HARP) core outcome set is needed to minimize heterogeneity in reporting and promote research excellence. Small single-centre studies offer limited value to assess the varied PCOS phenotypes. Efficient large scale data-sharing is needed to address complex research questions and glean the benefits of big data research. We propose a roadmap to address these challenges and remedy future research need by promoting patient and public involvement in PCOS research to guide research efforts and address real patients' needs; engaging all key stakeholder groups to promote a multi-disciplinary lifelong approach to new research; continuously refining research needs and priorities to revise the knowledge gap and allocate resources judiciously; standardizing outcomes definitions and measurement tools to harmonize reporting and promote excellence in research; and by investing in large data-sharing infrastructure to facilitate big data research and govern ethical data sharing.

引用

页码：523 / 528

页数：6