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9 results on '"Champagnat, Julie"'

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

Author

Darquy, Sylviane, Moutel, Grégoire, Lapointe, Anne-Sophie, D'Audiffret, Diane, Champagnat, Julie, Guerroui, Samia, Vendeville, Marie-Louise, Boespflug-Tanguy, Odile, Duchange, Nathalie, Laboratoire d'éthique médicale et de médecine légale (EA 4569), Université Paris Descartes - Paris 5 (UPD5)-Université Sorbonne Paris Cité (USPC), Unité de médecine sociale, Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Corentin Celton [Issy-les-Moulineaux], Hôpitaux Universitaires Paris Ouest - Hôpitaux Universitaires Île de France Ouest (HUPO)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpitaux Universitaires Paris Ouest - Hôpitaux Universitaires Île de France Ouest (HUPO), Université d'Auvergne - Clermont-Ferrand I (UdA), Service de neuropédiatrie [Debré], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Robert Debré, Neuroprotection du Cerveau en Développement / Promoting Research Oriented Towards Early Cns Therapies (PROTECT), Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Robert Debré-Université Paris Diderot - Paris 7 (UPD7)-Institut National de la Santé et de la Recherche Médicale (INSERM), Service de neurologie pédiatrique et maladies métaboliques, Université Paris Diderot - Paris 7 (UPD7)-Hôpital Robert Debré-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), LeukoTreat, and European Project: 241622,EC:FP7:HEALTH,FP7-HEALTH-2009-single-stage,LEUKOTREAT(2010)

Subjects
Database, Questionnaires, [SDV.GEN]Life Sciences [q-bio]/Genetics, [SDV.MHEP.PED]Life Sciences [q-bio]/Human health and pathology/Pediatrics, Informed Consent, Patient opinion, Rare disease, Leukodystrophies, [SDV.ETH]Life Sciences [q-bio]/Ethics
Abstract

International audience; 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.

Published
2016

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

Author

Darquy S, Moutel G, Lapointe AS, D'Audiffret D, Champagnat J, Guerroui S, Vendeville ML, Boespflug-Tanguy O, and Duchange N

Subjects
Adult, Biomedical Research, Clinical Trials as Topic, Databases, Factual, Europe, Family, Health Personnel, Humans, Middle Aged, Research Personnel, Information Dissemination, Leukoencephalopathies therapy, Rare Diseases therapy
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.

Published
2016
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