The New Zealand Neuromuscular Disease Registry

• Published in: Journal of clinical neuroscience Vol. 19; no. 12; pp. 1749 - 1750
• Main Authors: Rodrigues, Miriam, Hammond-Tooke, Graeme, Kidd, Alexa, Love, Donald, Patel, Rakesh, Dawkins, Hugh, Bellgard, Matthew, Roxburgh, Richard
• Format: Journal Article
• Language: English
• Published: Scotland Elsevier Ltd 01-12-2012
• Subjects: Charcot-Marie-Tooth disease; Clinical trials; Duchenne muscular dystrophy; Humans; Mental disorders; Muscular dystrophy; Nervous system; Neurology; Neuromuscular disease; Neuromuscular Diseases; New Zealand; Patient registry; Rare disease; Registries; Sound; Spinal muscular atrophy; New Zealand; Neuromuscular disease; Patient registry; Rare disease; Duchenne muscular dystrophy; Charcot-Marie-Tooth disease; Spinal muscular atrophy
• ISSN: 0967-5868; 1532-2653
• DOI: 10.1016/j.jocn.2012.04.008

Abstract 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.