Titre : | Experiences of caregivers of children with spinal muscular atrophy participating in the expanded access program for nusinersen: a longitudinal qualitative study |
Revue : | Orphanet journal of rare diseases, 15, 1 |
Auteurs : | Kiefer P ; Kirschner J ; Pechmann A ; Langer T |
Type de document : | Article |
Année de publication : | 07/2020 |
Pages : | p 194 |
Langues: | Anglais |
Mots-clés: | Compassionate care program;Expanded Access program;Interview study;Nusinersen;Patient experience;Qualitative research;Spinal muscular atrophy; |
Pubmed / DOI : | Pubmed : 32727502 / DOI : 10.1186/s13023-020-01477-7 |
N° Profil MNM : | 2020072 |
En ligne : | http://www.ncbi.nlm.nih.gov/pubmed/32727502 |