Titre : | Disease monitoring programs of rare genetic diseases: transparent data sharing between academic and commercial stakeholders |
Revue : | Orphanet journal of rare diseases, 16, 1 |
Auteurs : | Lochmuller H ; Ramirez AN ; Kakkis E |
Type de document : | Article |
Année de publication : | 20/03/2021 |
Pages : | p 141 |
Langues: | Anglais |
Mots-clés: | DMP;Data sharing;Disease monitoring program;GNE myopathy;GNE myopathy disease monitoring program;GNEM-DMP;Orphan drugs;Registries;Registry; |
Pubmed / DOI : | Pubmed : 33743771 / DOI : 10.1186/s13023-021-01687-7 |
N° Profil MNM : | 2021032 |
En ligne : | http://www.ncbi.nlm.nih.gov/pubmed/33743771 |