Title: | Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry |
Journal : | Journal of neurology, 263, 7 |
Authors: | Evangelista T, Author ; Wood L ; Fernandez Torron R ; Williams M ; Smith D ; Lunt P ; Hudson J ; Norwood F ; Orrell R ; Willis T ; Hilton-Jones D ; Rafferty K ; Guglieri M ; Lochmuller H |
Material Type: | Article |
Publication Date: | 2016 |
Size: | p 1401 |
Languages: | English |
Keywords : | clinical presentation ; epidemiology ; ethics ; facioscapulohumeral muscular dystrophy ; health data collection ; patient registers ; research prospects ; TREAT-NMD ; United Kingdom |
Keywords: | Clinical trials;Data sharing;FSHD;Minimal dataset;Rare diseases;Registries; |
Pubmed / DOI : | DOI : 10.1007/s00415-016-8132-1 / Pubmed : 27159994 |
Link for e-copy: | http://www.ncbi.nlm.nih.gov/pubmed/27159994 |