The New Zealand neuromuscular disease registry

Journal of Clinical Neuroscience

Volumn 19, Issue 12, 2012, Pages 1749-1750

  Rodrigues, Miriam ^a,b   Hammond Tooke, Graeme ^c,d   Kidd, Alexa ^e   Love, Donald ^a   Patel, Rakesh ^f   Dawkins, Hugh ^g   Bellgard, Matthew ^h   Roxburgh, Richard ^a,i  

^a AUCKLAND CITY HOSPITAL   (New Zealand)

^b Muscular Dystrophy Association of New Zealand   (New Zealand)

^c UNIVERSITY OF OTAGO   (New Zealand)

^d DUNEDIN HOSPITAL   (New Zealand)

^e CANTERBURY HEALTH LABORATORIES   (New Zealand)

^f STARSHIP CHILDREN S HOSPITAL   (New Zealand)

^g DEPARTMENT OF HEALTH   (Australia)

^h MURDOCH UNIVERSITY   (Australia)

ⁱ UNIVERSITY OF AUCKLAND   (New Zealand)

Author keywords

Charcot Marie Tooth disease; Duchenne muscular dystrophy; Neuromuscular disease; Patient registry; Rare disease; Spinal muscular atrophy

Indexed keywords

ARTICLE; DATA COLLECTION METHOD; DISEASE REGISTRY; INFORMATION DISSEMINATION; INTERNET; MEDICAL RECORD; NEUROMUSCULAR DISEASE; NEW ZEALAND; PATIENT INFORMATION; PRIORITY JOURNAL;

HUMANS; NEUROMUSCULAR DISEASES; NEW ZEALAND; REGISTRIES;

EID: 84868301800     PISSN: 09675868     EISSN: 15322653     Source Type: Journal    
DOI: 10.1016/j.jocn.2012.04.008     Document Type: Article

References (4)

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2. R. Thompson, B. Schoser, and D.G. Monckton Patient registries and trial readiness in myotonic dystrophy-TREAT-NMD/Marigold International Workshop Report Neuromuscul Disord 19 2009 860 866
3. Government Response to Report of the Health Committee on its Inquiry into improving New Zealand's environment to support innovation through clinical trials, presented to the House of Representatives in accordance with Standing Order 248 (J.1) 2011.
4. Bellgard M, Mcgregor A, Janon F, et al. A modular approach to disease registry design: successful adoption of an Internet-based rare disease registry. Hum Mutat 2012. [Epub ahead of print].