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新西兰神经肌肉疾病登记处。

The New Zealand Neuromuscular Disease Registry.

机构信息

Neurology Department, Auckland City Hospital, Auckland Mail Centre, Auckland, New Zealand.

出版信息

J Clin Neurosci. 2012 Dec;19(12):1749-50. doi: 10.1016/j.jocn.2012.04.008. Epub 2012 Sep 19.

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.

摘要

由于难以确定足够数量的患者参加临床试验,因此开发有效的神经肌肉疾病治疗方法是一项重大挑战。在这些罕见疾病中,患者人数较少也会对基于类似诊断患者经验建立健全的临床实践产生影响。新西兰肌肉萎缩症协会(MDA)与有兴趣的临床医生合作,建立了新西兰神经肌肉疾病(NZ NMD)登记处,以帮助解决这些问题。NZ NMD 登记处的独特之处在于,它为所有神经肌肉疾病建立了一个登记处,这将使神经肌肉疾病患者及其临床医生都受益匪浅。

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