Claude Pellen , Nchangwi Syntia Munung , Anna Catharina Armond , Daniel Kulp , Ulrich Mansmann , Maximilian Siebert , Florian Naudet
{"title":"Data management and sharing","authors":"Claude Pellen , Nchangwi Syntia Munung , Anna Catharina Armond , Daniel Kulp , Ulrich Mansmann , Maximilian Siebert , Florian Naudet","doi":"10.1016/j.jclinepi.2025.111680","DOIUrl":null,"url":null,"abstract":"<div><div>Guided by the FAIR principles (Findable, Accessible, Interoperable, Reusable), responsible data sharing requires well-organized, high-quality datasets. However, researchers often struggle with implementing Data Management and Sharing Plans due to lack of knowledge on how to do this, time constraints, and legal, technical, and financial challenges, particularly concerning data ownership and privacy. While patients support data sharing, researchers and funders may hesitate, fearing the loss of intellectual property or competitive advantage. Although some journals and institutions encourage or mandate data sharing, further progress is needed. Additionally, global solutions are vital to ensure equitable participation from low- and middle-income countries. Ultimately, responsible data sharing requires strategic planning, cultural shifts in research, and coordinated efforts from all stakeholders to become standard practice in biomedical research.</div></div>","PeriodicalId":51079,"journal":{"name":"Journal of Clinical Epidemiology","volume":"180 ","pages":"Article 111680"},"PeriodicalIF":7.3000,"publicationDate":"2025-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Clinical Epidemiology","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0895435625000137","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Guided by the FAIR principles (Findable, Accessible, Interoperable, Reusable), responsible data sharing requires well-organized, high-quality datasets. However, researchers often struggle with implementing Data Management and Sharing Plans due to lack of knowledge on how to do this, time constraints, and legal, technical, and financial challenges, particularly concerning data ownership and privacy. While patients support data sharing, researchers and funders may hesitate, fearing the loss of intellectual property or competitive advantage. Although some journals and institutions encourage or mandate data sharing, further progress is needed. Additionally, global solutions are vital to ensure equitable participation from low- and middle-income countries. Ultimately, responsible data sharing requires strategic planning, cultural shifts in research, and coordinated efforts from all stakeholders to become standard practice in biomedical research.
期刊介绍:
The Journal of Clinical Epidemiology strives to enhance the quality of clinical and patient-oriented healthcare research by advancing and applying innovative methods in conducting, presenting, synthesizing, disseminating, and translating research results into optimal clinical practice. Special emphasis is placed on training new generations of scientists and clinical practice leaders.