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

Research output: Contribution to journalArticlepeer-review

Authors

  • Bassel H Al Wattar
  • Aurora Bueno
  • Miguel Garcia Martin
  • Naomi Cano Ibáñez
  • Klejda Harasani
  • Rhonda Garad
  • Steve Franks
  • Adam Balen
  • Priya Bhide
  • Terhi Piltonen
  • Daniela Romualdi
  • Joop Laven
  • Ngawai Moss
  • Caroline Andrews
  • Rachel Hawkes
  • Ben W Mol
  • Helena Teede
  • Khalid Saeed Khan

Colleges, School and Institutes

External organisations

  • University of Warwick
  • University of Granada
  • University of Medicine of Tirana
  • Leeds Teaching Hospitals NHS Trust
  • Homerton University Hospital NHS Foundation Trust
  • University of Oulu
  • Erasmus Medical Center
  • Verity-The PCOS Self Help Group
  • Queen Mary, University of London
  • University College London Hospitals NHS Foundation Trust
  • Monash University
  • Agostino Gemelli University Policlinic
  • University of Aberdeen
  • Imperial College London

Abstract

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.

Bibliographic note

Publisher 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.

Details

Original languageEnglish
Pages (from-to)523-528
Number of pages6
JournalHuman Reproduction
Volume36
Issue number3
Early online date17 Dec 2020
Publication statusPublished - Mar 2021

Keywords

  • big data, core outcomes, polycystic ovary syndrome, public involvement, reporting, stakeholder