{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,18]],"date-time":"2026-02-18T23:39:56Z","timestamp":1771457996220,"version":"3.50.1"},"reference-count":31,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2020,12,17]],"date-time":"2020-12-17T00:00:00Z","timestamp":1608163200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"name":"Lecturership from the UK National Health Institute of Research"},{"name":"University of Granada funded by the Beatriz Galindo (senior modality) program of the Spanish Ministry of Education"},{"DOI":"10.13039\/501100000925","name":"NHMRC","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,2,18]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n               <jats:p>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\u2019s 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 \u2018significant\u2019 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\u2019 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.<\/jats:p>","DOI":"10.1093\/humrep\/deaa331","type":"journal-article","created":{"date-parts":[[2020,11,4]],"date-time":"2020-11-04T20:22:32Z","timestamp":1604521352000},"page":"523-528","source":"Crossref","is-referenced-by-count":15,"title":["Harmonizing research outcomes for polycystic ovary syndrome (HARP), a marathon not a sprint: current challenges and future research need"],"prefix":"10.1093","volume":"36","author":[{"given":"Bassel H","family":"Al Wattar","sequence":"first","affiliation":[{"name":"Warwick Medical School, University of Warwick, Coventry, UK"},{"name":"Reproductive Medicine Unit, Institute for Women\u2019s Health, University College London Hospitals, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aurora","family":"Bueno","sequence":"additional","affiliation":[{"name":"Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain"},{"name":"Consortium for Biomedical Research in Epidemiology & Public Health (CIBER Epidemiolog\u00eda y Salud P\u00fablica-CIBERESP), Madrid, Spain"},{"name":"Inst Invest Biosanitaria Ibs GRANADA, Granada, Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miguel Garcia","family":"Martin","sequence":"additional","affiliation":[{"name":"Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain"},{"name":"Consortium for Biomedical Research in Epidemiology & Public Health (CIBER Epidemiolog\u00eda y Salud P\u00fablica-CIBERESP), Madrid, Spain"},{"name":"Inst Invest Biosanitaria Ibs GRANADA, Granada, Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Naomi Cano","family":"Ib\u00e1\u00f1ez","sequence":"additional","affiliation":[{"name":"Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain"},{"name":"Consortium for Biomedical Research in Epidemiology & Public Health (CIBER Epidemiolog\u00eda y Salud P\u00fablica-CIBERESP), Madrid, Spain"},{"name":"Inst Invest Biosanitaria Ibs GRANADA, Granada, Spain"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Klejda","family":"Harasani","sequence":"additional","affiliation":[{"name":"Department of Pharmacy, University of Medicine of Tirana, Tirana, Albania"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rhonda","family":"Garad","sequence":"additional","affiliation":[{"name":"National Health and Medical Research Council Centre for Research Excellence in PCOS, Monash Centre for Health Research and Implementation, Monash University Melbourne, Melbourne, VIC, Australia"},{"name":"Monash Centre for Health Research and Implementation, School Public Health, Monash University, Clayton, VIC, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Steve","family":"Franks","sequence":"additional","affiliation":[{"name":"Imperial College School of Medicine, Institute of Reproductive and Developmental Biology, Hammersmith Hospital, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Adam","family":"Balen","sequence":"additional","affiliation":[{"name":"Leeds Fertility, Seacroft Hospital, Leeds Teaching Hospitals NHS Trust, Leeds, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Priya","family":"Bhide","sequence":"additional","affiliation":[{"name":"Homerton University Hospital NHS Foundation Trust, London, UK"},{"name":"Barts Research Centre for Women\u2019s Health (BARC), Women\u2019s Health Research Unit, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Terhi","family":"Piltonen","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology, PEDEGO Research Unit, Medical Research Centre, Oulu University Hospital, University of Oulu, Oulu, Finland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daniela","family":"Romualdi","sequence":"additional","affiliation":[{"name":"Department of Women's and Children's Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy"},{"name":"Department of Woman and Child Health, Azienda Ospedaliera Card.Panico, Tricase, Italy"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joop","family":"Laven","sequence":"additional","affiliation":[{"name":"Division of Reproductive Endocrinology and Infertility, Department of Obstetrics and Gynecology, Erasmus University Medical Centre, Rotterdam, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ngawai","family":"Moss","sequence":"additional","affiliation":[{"name":"Barts Research Centre for Women\u2019s Health (BARC), Women\u2019s Health Research Unit, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Caroline","family":"Andrews","sequence":"additional","affiliation":[{"name":"Verity\u2014The PCOS Self Help Group, Surry, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Hawkes","sequence":"additional","affiliation":[{"name":"Verity\u2014The PCOS Self Help Group, Surry, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ben W","family":"Mol","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynaecology, University of Monash, Melbourne, Australia"},{"name":"Aberdeen Centre for Women's Health Research, University of Aberdeen, Aberdeen, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helena","family":"Teede","sequence":"additional","affiliation":[{"name":"National Health and Medical Research Council Centre for Research Excellence in PCOS, Monash Centre for Health Research and Implementation, Monash University Melbourne, Melbourne, VIC, Australia"},{"name":"Monash Centre for Health Research and Implementation, School Public Health, Monash University, Clayton, VIC, 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