Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project
Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project
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DOI：
10.1038/ejhg.2015.115
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发表时间：
2016-03-01
影响因子：
5.2
通讯作者：
Duchange, Nathalie
中科院分区：
文献类型：
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作者：
Darquy, Sylviane;Moutel, Gregoire;Duchange, Nathalie
本研究的目的是探讨患者和家庭的意见，他们的医疗数据的背景下，汇编欧洲脑白质营养不良数据库的共享。在转诊中心和欧洲脑白质营养不良协会的帮助下发放了调查问卷，并对返回的问卷进行了定量和定性分析。这项研究发现，患者/家属强烈赞成参与。患者/家属对这类研究的发展抱有很大的希望和信任。他们强烈需要数据库管理方面的信息和透明度，访问数据的条件，进行的所有研究，与制药业的伙伴关系，他们还需要获得结果。我们的研究结果带来了伦理驱动的参数相结合的过程中，初步广泛的同意与持续的信息。在这两个方面，我们提出了关键项目交付数据库参与者。
The purpose of this study was to explore patient and family views on the sharing of their medical data in the context of compiling a European leukodystrophies database. A survey questionnaire was delivered with help from referral centers and the European Leukodystrophies Association, and the questionnaires returned were both quantitatively and qualitatively analyzed. This study found that patients/families were strongly in favor of participating. Patients/families hold great hope and trust in the development of this type of research. They have a strong need for information and transparency on database governance, the conditions framing access to data, all research conducted, partnerships with the pharmaceutical industry, and they also need access to results. Our findings bring ethics-driven arguments for a process combining initial broad consent with ongoing information. On both, we propose key item-deliverables to database participants.