Journal
JOURNAL OF CLINICAL NEUROSCIENCE
Volume 19, Issue 12, Pages 1749-1750Publisher
ELSEVIER SCI LTD
DOI: 10.1016/j.jocn.2012.04.008
Keywords
Neuromuscular disease; Patient registry; Rare disease; Duchenne muscular dystrophy; Spinal muscular atrophy; Charcot-Marie-Tooth disease
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Funding
- Muscular Dystrophy Association of New Zealand
- Richdale Trust
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The development of effective treatments for neuromuscular diseases is a significant challenge due to difficulties in identifying adequate numbers of patients for clinical trials. Low patient numbers in these rare diseases also has an effect when establishing sound clinical practices based on experience gained from patients with similar diagnosis. The Muscular Dystrophy Association of New Zealand (MDA), working in consort with interested clinicians has established the New Zealand Neuromuscular Disease (NZ NMD) Registry in order to help address these problems. The NZ NMD Registry is exceptional in that it comprises one registry for all neuromuscular conditions and will significantly benefit both patients with neuromuscular disease and their clinicians. (c) 2012 Elsevier Ltd. All rights reserved.
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