Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry

Journal of Neurology

Volumn 263, Issue 7, 2016, Pages 1401-1408

  Evangelista, Teresinha ^a   Wood, Libby ^a   Fernandez Torron, Roberto ^a,b,c   Williams, Maggie ^d   Smith, Debbie ^d   Lunt, Peter ^d   Hudson, Judith ^a   Norwood, Fiona ^e   Orrell, Richard ^e   Willis, Tracey ^f   Hilton Jones, David ^g   Rafferty, Karen ^a   Guglieri, Michela ^a   Lochmüller, Hanns ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

^b HOSPITAL DONOSTIA   (Spain)

^c BIODONOSTIA HEALTH RESEARCH INSTITUTE   (Spain)

^d SOUTHMEAD HOSPITAL   (United Kingdom)

^e KING S COLLEGE HOSPITAL   (United Kingdom)

^f ROBERT JONES AND AGNES HUNT ORTHOPAEDIC HOSPITAL   (United Kingdom)

^g JOHN RADCLIFFE HOSPITAL   (United Kingdom)

Author keywords

Clinical trials; Data sharing; FSHD; Minimal dataset; Rare diseases; Registries

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; CHILD; DISEASE REGISTRY; FACIAL WEAKNESS; FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY; FEMALE; FOOT WEAKNESS; HIP GIRDLE WEAKNESS; HUMAN; LIMB WEAKNESS; MALE; MUSCLE WEAKNESS; OUTCOME ASSESSMENT; PAIN; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; RESPIRATORY FAILURE; SHOULDER GIRDLE MUSCLE WEAKNESS; SYMPTOMATOLOGY; UNITED KINGDOM; VERY ELDERLY; AGE DISTRIBUTION; CLASSIFICATION; FACTUAL DATABASE; MIDDLE AGED; MUSCULAR DYSTROPHY, FACIOSCAPULOHUMERAL; PRESCHOOL CHILD; REGISTER; RETROSPECTIVE STUDY; STATISTICS AND NUMERICAL DATA; YOUNG ADULT;

ADOLESCENT; ADULT; AGE DISTRIBUTION; AGED; AGED, 80 AND OVER; CHILD; CHILD, PRESCHOOL; DATABASES, FACTUAL; FEMALE; HUMANS; MALE; MIDDLE AGED; MUSCULAR DYSTROPHY, FACIOSCAPULOHUMERAL; REGISTRIES; RETROSPECTIVE STUDIES; SURVEYS AND QUESTIONNAIRES; UNITED KINGDOM; YOUNG ADULT;

EID: 84966570536     PISSN: 03405354     EISSN: 14321459     Source Type: Journal    
DOI: 10.1007/s00415-016-8132-1     Document Type: Article

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