期刊
JOURNAL OF CLINICAL NEUROSCIENCE
卷 19, 期 12, 页码 1749-1750出版社
ELSEVIER SCI LTD
DOI: 10.1016/j.jocn.2012.04.008
关键词
Neuromuscular disease; Patient registry; Rare disease; Duchenne muscular dystrophy; Spinal muscular atrophy; Charcot-Marie-Tooth disease
资金
- Muscular Dystrophy Association of New Zealand
- Richdale Trust
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.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据