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荷兰神经肌肉疾病数据库CRAMP(所有肌病和多神经病计算机登记库):开发与初步数据

The Dutch neuromuscular database CRAMP (Computer Registry of All Myopathies and Polyneuropathies): development and preliminary data.

作者信息

van Engelen B G M, van Veenendaal H, van Doorn P A, Faber C G, van der Hoeven J H, Janssen N G, Notermans N C, van Schaik I N, Visser L H, Verschuuren J J G M

机构信息

Neuromuscular Centre Nijmegen, Department of Neurology, Radboud University Nijmegen Medical Centre, 6500 HB Nijmegen, The Netherlands.

出版信息

Neuromuscul Disord. 2007 Jan;17(1):33-7. doi: 10.1016/j.nmd.2006.09.017. Epub 2006 Dec 1.

Abstract

Each of the various neuromuscular diseases is rare. Consequently, solid epidemiological data are not available and it is often difficult to find sufficient patients for studies. For this reason, the Dutch neuromuscular database, CRAMP (Computer Registry of All Myopathies and Polyneuropathies), was developed in 2004 by the Dutch Neuromuscular Research Support Centre, to store information on patient characteristics and diagnoses (based on Rowland and McLeod's classification) in a uniform and easily retrievable manner. Care was taken to preserve data confidentiality. It is envisaged that CRAMP will prove particularly useful for studies in which multicentre collaboration is needed to recruit a sufficiently large number of patients. More than 10,000 patients with neuromuscular diseases (4,837 female, 5,476 male) have been registered since 2004, half of whom (n=5059) have peripheral nerve disorders.

摘要

各种神经肌肉疾病中的每一种都很罕见。因此,缺乏可靠的流行病学数据,而且通常很难找到足够数量的患者进行研究。出于这个原因,荷兰神经肌肉数据库CRAMP(所有肌病和多神经病计算机登记处)于2004年由荷兰神经肌肉研究支持中心开发,以统一且易于检索的方式存储有关患者特征和诊断(基于罗兰和麦克劳德的分类)的信息。已注意保护数据的保密性。预计CRAMP对于那些需要多中心合作以招募足够大量患者的研究将特别有用。自2004年以来,已有超过10000名神经肌肉疾病患者(4837名女性,5476名男性)登记在册,其中一半(n = 5059)患有周围神经疾病。

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