Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations

BACKGROUND: The needs and benefits of sharing health data to advance scientific research and improve clinical benefits have been well documented in recent years, specifically in the field of rare diseases where knowledge and expertise are limited and patient populations are geographically dispersed....

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Detalles Bibliográficos
Autores principales: Courbier, Sandra, Dimond, Rebecca, Bros-Facer, Virginie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6625078/
https://www.ncbi.nlm.nih.gov/pubmed/31300010
http://dx.doi.org/10.1186/s13023-019-1123-4

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6625078/
https://www.ncbi.nlm.nih.gov/pubmed/31300010
http://dx.doi.org/10.1186/s13023-019-1123-4

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