Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project. - Inserm - Institut national de la santé et de la recherche médicale Access content directly
Journal Articles European Journal of Human Genetics Year : 2016

Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.

Abstract

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.
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Dates and versions

inserm-01179381 , version 1 (22-07-2015)

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Sylviane Darquy, Grégoire Moutel, Anne-Sophie Lapointe, Diane d'Audiffret, Julie Champagnat, et al.. Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.: Survey assessing data sharing in leukodystrophies . European Journal of Human Genetics, 2016, 24 (3), pp.338-43. ⟨10.1038/ejhg.2015.115⟩. ⟨inserm-01179381⟩
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