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多囊卵巢综合征研究结果协调(HARP):一场马拉松,而非短跑——当前挑战与未来研究需求。

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

机构信息

Warwick Medical School, University of Warwick, Coventry, UK.

Reproductive Medicine Unit, Institute for Women's Health, University College London Hospitals, London, UK.

出版信息

Hum Reprod. 2021 Feb 18;36(3):523-528. doi: 10.1093/humrep/deaa331.

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.

摘要

投资于临床研究和循证医学有助于改善多囊卵巢综合征(PCOS)女性的护理。然而,对于 PCOS 的最佳预防和管理策略,仍有几个重要问题尚未得到解答。解决这一不确定性的主要障碍是研究方法不当,导致证据综合效率低下和研究资源浪费。PCOS 研究通常由不同的专业团队在孤立的环境中进行,导致不协调和碎片化的努力,忽视了 PCOS 对女性健康的终身影响。关键利益相关者和普通大众之间的参与度低,继续限制了研究对社会的影响和益处。仅报告具有“显著”P 值的替代结局是 PCOS 研究结果中的常见弊端。需要有效地采用多囊卵巢综合征协调研究结果(HARP)核心结局集,以最小化报告的异质性并促进研究卓越。小型单中心研究对于评估各种 PCOS 表型的价值有限。需要有效的大规模数据共享来解决复杂的研究问题并从大数据研究中获益。我们提出了一条路线图,通过促进患者和公众参与 PCOS 研究来指导研究工作并满足真正的患者需求,解决这些挑战和纠正未来的研究需求;让所有关键利益相关者群体参与进来,促进针对新研究的多学科终身方法;不断完善研究需求和优先事项,以修订知识差距并明智地分配资源;标准化结局定义和测量工具,以协调报告并促进研究卓越;并投资于大型数据共享基础设施,以促进大数据研究和管理道德数据共享。

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