How ready are endocrine scientists to share retrospective clinical data for research: a perspective from the European Network for the Study of Adrenal Tumors.

IF 5.3 1区 医学 Q1 ENDOCRINOLOGY & METABOLISM
Antoan Stefan Sojat, Bastien Rance, Antoine Neuraz, Martin Fassnacht, Felix Beuschlein, Mercedes Robledo, Michaela Luconi, Dimitra Vassiliadi, Anthony Stell, Peter Igaz, Bogdan Dugic, Ljiljana V Marina, Anita Burgun, Darko Kastelan, Guillaume Assie
{"title":"How ready are endocrine scientists to share retrospective clinical data for research: a perspective from the European Network for the Study of Adrenal Tumors.","authors":"Antoan Stefan Sojat, Bastien Rance, Antoine Neuraz, Martin Fassnacht, Felix Beuschlein, Mercedes Robledo, Michaela Luconi, Dimitra Vassiliadi, Anthony Stell, Peter Igaz, Bogdan Dugic, Ljiljana V Marina, Anita Burgun, Darko Kastelan, Guillaume Assie","doi":"10.1093/ejendo/lvaf005","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Individual patients' data sharing requires interoperability, security, ethical, and legal compliance. The aim was to assess the landscape and sharing capacities between endocrine researchers.</p><p><strong>Design: </strong>A standardized survey (SurveyMonkey®) with 67 questions was sent to European Network for the Study of Adrenal Tumors centers.</p><p><strong>Methods: </strong>Answers were counted as absolute numbers and percentages. Comparisons between inclusiveness target countries (ITC) and non-ITC (defined by Cooperation in Science & Technology Action) were performed using Fisher's exact test.</p><p><strong>Results: </strong>Seventy-three centers from 34 countries answered the survey. Electronic health record (EHR) systems are now the main source of data (90%). However, significant variability was reported, entailing >35 EHR providers, and variable data collected. Variable stakeholders' implication for enabling data sharing was reported, with more lawyers (P = .023), patient representatives (P < .001), ethicists (P = .002), methodologists (P = .023), and information technology experts (P < .001) in non-ITC centers. Implication of information technologies experts for data collection and sharing was underwhelming (33%). Funding for clinical research was higher in non-ITC than in ITC for clinical trials (P = .01) and for registry-based and cohort studies (P = .05). However, for retrospective studies addressing a specific clinical question, the funding was either very low (<10%) or nonexistent for both ITC and non-ITC (37% and 46%, respectively), with no dedicated funding for information technology (86%) and ethical and regulatory aspects (88%).</p><p><strong>Conclusions: </strong>In the absence of dedicated funding for retrospective research, current requirements for data sharing are obstacles.</p>","PeriodicalId":11884,"journal":{"name":"European Journal of Endocrinology","volume":"192 4","pages":"491-509"},"PeriodicalIF":5.3000,"publicationDate":"2025-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Endocrinology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/ejendo/lvaf005","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ENDOCRINOLOGY & METABOLISM","Score":null,"Total":0}
引用次数: 0

Abstract

Objective: Individual patients' data sharing requires interoperability, security, ethical, and legal compliance. The aim was to assess the landscape and sharing capacities between endocrine researchers.

Design: A standardized survey (SurveyMonkey®) with 67 questions was sent to European Network for the Study of Adrenal Tumors centers.

Methods: Answers were counted as absolute numbers and percentages. Comparisons between inclusiveness target countries (ITC) and non-ITC (defined by Cooperation in Science & Technology Action) were performed using Fisher's exact test.

Results: Seventy-three centers from 34 countries answered the survey. Electronic health record (EHR) systems are now the main source of data (90%). However, significant variability was reported, entailing >35 EHR providers, and variable data collected. Variable stakeholders' implication for enabling data sharing was reported, with more lawyers (P = .023), patient representatives (P < .001), ethicists (P = .002), methodologists (P = .023), and information technology experts (P < .001) in non-ITC centers. Implication of information technologies experts for data collection and sharing was underwhelming (33%). Funding for clinical research was higher in non-ITC than in ITC for clinical trials (P = .01) and for registry-based and cohort studies (P = .05). However, for retrospective studies addressing a specific clinical question, the funding was either very low (<10%) or nonexistent for both ITC and non-ITC (37% and 46%, respectively), with no dedicated funding for information technology (86%) and ethical and regulatory aspects (88%).

Conclusions: In the absence of dedicated funding for retrospective research, current requirements for data sharing are obstacles.

内分泌科学家为研究分享回顾性临床数据做好了多大的准备:来自欧洲肾上腺肿瘤研究网络的观点。
目的:个体患者数据共享需要互操作性、安全性、伦理性和法律合规性。其目的是评估环境和内分泌研究人员之间的共享能力。设计:一份有67个问题的标准化调查(SurveyMonkey®)被发送到欧洲肾上腺肿瘤研究网络中心。方法:回答以绝对数字和百分比计算。采用Fisher精确检验对包容性目标国家(ITC)和非ITC(由科技行动合作定义)进行了比较。结果:来自34个国家的73个中心接受了调查。电子健康记录(EHR)系统现在是主要的数据来源(90%)。然而,报告中有显著的可变性,涉及bbb35个电子病历提供者,收集的数据也不同。报告显示,非itc中心的律师(P = 0.023)、患者代表(P < .001)、伦理学家(P = .002)、方法学家(P = 0.023)和信息技术专家(P < .001)更多地涉及可变利益相关者对数据共享的影响。信息技术专家对数据收集和共享的影响并不令人印象深刻(33%)。在临床试验方面,非ITC组的临床研究经费高于ITC组(P = 0.01),基于注册的研究和队列研究(P = 0.05)。然而,对于解决特定临床问题的回顾性研究,资金要么非常低(结论:在缺乏回顾性研究的专门资金的情况下,目前对数据共享的要求是障碍。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
European Journal of Endocrinology
European Journal of Endocrinology 医学-内分泌学与代谢
CiteScore
9.80
自引率
3.40%
发文量
354
审稿时长
1 months
期刊介绍: European Journal of Endocrinology is the official journal of the European Society of Endocrinology. Its predecessor journal is Acta Endocrinologica. The journal publishes high-quality original clinical and translational research papers and reviews in paediatric and adult endocrinology, as well as clinical practice guidelines, position statements and debates. Case reports will only be considered if they represent exceptional insights or advances in clinical endocrinology. Topics covered include, but are not limited to, Adrenal and Steroid, Bone and Mineral Metabolism, Hormones and Cancer, Pituitary and Hypothalamus, Thyroid and Reproduction. In the field of Diabetes, Obesity and Metabolism we welcome manuscripts addressing endocrine mechanisms of disease and its complications, management of obesity/diabetes in the context of other endocrine conditions, or aspects of complex disease management. Reports may encompass natural history studies, mechanistic studies, or clinical trials. Equal consideration is given to all manuscripts in English from any country.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信