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

big data core outcomes polycystic ovary syndrome public involvement reporting stakeholder

Journal

Human reproduction (Oxford, England)
ISSN: 1460-2350
Titre abrégé: Hum Reprod
Pays: England
ID NLM: 8701199

Informations de publication

Date de publication:
18 02 2021
Historique:
received: 15 07 2020
revised: 14 09 2020
pubmed: 18 12 2020
medline: 29 5 2021
entrez: 17 12 2020
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 33332572
pii: 6041061
doi: 10.1093/humrep/deaa331
doi:

Substances chimiques

Carrier Proteins 0
Cytokines 0
pleiotrophin 134034-50-7

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

523-528

Informations de copyright

© The Author(s) 2020. Published by Oxford University Press on behalf of European Society of Human Reproduction and Embryology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Auteurs

Bassel H Al Wattar (BH)

Warwick Medical School, University of Warwick, Coventry, UK.
Reproductive Medicine Unit, Institute for Women's Health, University College London Hospitals, London, UK.

Aurora Bueno (A)

Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain.
Consortium for Biomedical Research in Epidemiology & Public Health (CIBER Epidemiología y Salud Pública-CIBERESP), Madrid, Spain.
Inst Invest Biosanitaria Ibs GRANADA, Granada, Spain.

Miguel Garcia Martin (MG)

Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain.
Consortium for Biomedical Research in Epidemiology & Public Health (CIBER Epidemiología y Salud Pública-CIBERESP), Madrid, Spain.
Inst Invest Biosanitaria Ibs GRANADA, Granada, Spain.

Naomi Cano Ibáñez (NC)

Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain.
Consortium for Biomedical Research in Epidemiology & Public Health (CIBER Epidemiología y Salud Pública-CIBERESP), Madrid, Spain.
Inst Invest Biosanitaria Ibs GRANADA, Granada, Spain.

Klejda Harasani (K)

Department of Pharmacy, University of Medicine of Tirana, Tirana, Albania.

Rhonda Garad (R)

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.
Monash Centre for Health Research and Implementation, School Public Health, Monash University, Clayton, VIC, Australia.

Steve Franks (S)

Imperial College School of Medicine, Institute of Reproductive and Developmental Biology, Hammersmith Hospital, London, UK.

Adam Balen (A)

Leeds Fertility, Seacroft Hospital, Leeds Teaching Hospitals NHS Trust, Leeds, UK.

Priya Bhide (P)

Homerton University Hospital NHS Foundation Trust, London, UK.
Barts Research Centre for Women's Health (BARC), Women's Health Research Unit, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.

Terhi Piltonen (T)

Department of Obstetrics and Gynecology, PEDEGO Research Unit, Medical Research Centre, Oulu University Hospital, University of Oulu, Oulu, Finland.

Daniela Romualdi (D)

Department of Women's and Children's Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy.
Department of Woman and Child Health, Azienda Ospedaliera Card.Panico, Tricase, Italy.

Joop Laven (J)

Division of Reproductive Endocrinology and Infertility, Department of Obstetrics and Gynecology, Erasmus University Medical Centre, Rotterdam, The Netherlands.

Ngawai Moss (N)

Barts Research Centre for Women's Health (BARC), Women's Health Research Unit, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK.

Caroline Andrews (C)

Verity-The PCOS Self Help Group, Surry, UK.

Rachel Hawkes (R)

Verity-The PCOS Self Help Group, Surry, UK.

Ben W Mol (BW)

Department of Obstetrics and Gynaecology, University of Monash, Melbourne, Australia.
Aberdeen Centre for Women's Health Research, University of Aberdeen, Aberdeen, UK.

Helena Teede (H)

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.
Monash Centre for Health Research and Implementation, School Public Health, Monash University, Clayton, VIC, Australia.

Shakila Thangaratinam (S)

Institute of Metabolism and Systems Research, University of Birmingham, Birmingham, UK.

Khalid Saeed Khan (KS)

Department of Preventive Medicine and Public Health, University of Granada, Granada, Spain.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH