The cerebral palsy research registry: development and progress toward national collaboration in the United States.
The cerebral palsy research registry: development and progress toward national collaboration in the United States.
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DOI：
10.1177/0883073811408903
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发表时间：
2011-12
影响因子：
1.9
通讯作者：
Dewald JP
中科院分区：
文献类型：
--
作者：
Hurley DS;Sukal-Moulton T;Msall ME;Gaebler-Spira D;Krosschell KJ;Dewald JP
脑瘫是儿童最常见的神经发育性运动障碍。这种情况需要医疗，教育，社会和康复资源在整个生命周期。一些国家已经开发了基于人群的登记系统，用于前瞻性纵向收集病因学、人口统计学和功能严重程度。美国还没有建立一个全面的计划来发展这样一个登记册。障碍包括人口规模大、机构间合作差以及医疗和社会系统分散。脑瘫研究登记处的创建是为了填补人口和临床脑瘫登记处之间的差距，并促进该领域的研究。这是通过将脑瘫患者及其家人与区域研究人员网络联系起来来实现的。本文描述了一个可扩展的脑瘫研究登记处的发展，其现状，以及它对美国和国外脑瘫患者家庭和个人的影响。
Cerebral palsy is the most common neurodevelopmental motor disability in children. The condition requires medical, educational, social, and rehabilitative resources throughout the life span. Several countries have developed population-based registries that serve the purpose of prospective longitudinal collection of etiologic, demographic, and functional severity. The United States has not created a comprehensive program to develop such a registry. Barriers have been large population size, poor interinstitution collaboration, and decentralized medical and social systems. The Cerebral Palsy Research Registry was created to fill the gap between population and clinical-based cerebral palsy registries and promote research in the field. This is accomplished by connecting persons with cerebral palsy, as well as their families, to a network of regional researchers. This article describes the development of an expandable cerebral palsy research registry, its current status, and the potential it has to affect families and persons with cerebral palsy in the United States and abroad.
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