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

Courbier S, Dimond R, Bros-Facer V. 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. Orphanet journal of rare diseases 2019;14:175   Abstract BACKGROUND: The needs and benefits of sharing health data to advance scientific research and improve […]