Sabina Gainotti

Recommendations for Improving the Quality of Rare Disease Registries

Yllka Kodra, Jérôme Weinbach, Manuel Posada de la Paz et al. · International Journal of Environmental Research and Public Health · 2018 · 199 citations · Full text

Computing, Biomedical Informatics, Health Informatics +15

The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

Catherine L. Bladen, Karen Rafferty, Volker Straub et al. · Human Mutation · 2013 · 108 citations

Medicine, Neurology, Good Clinical Practice +13

‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

Pauline McCormack, Anna Kole, Sabina Gainotti et al. · European Journal of Human Genetics · 2016 · 101 citations · Full text

Life Sciences, Bioinformatics, Health Informatics +15

Nonurgent patients in the emergency department? A French formula to prevent misuse

Stéphanie Gentile, Pascal Vignally, Anne-Claire Durand et al. · BMC Health Services Research · 2010 · 100 citations · Full text

Medicine, Emergency Medical Services, Emergency Medicine +13

Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

Sabina Gainotti, Simon Woods, Anna Kole et al. · European Journal of Human Genetics · 2016 · 67 citations · Full text

Public Health, Clinical Sciences, Clinical Research Regulation +16