The national registry of veterans with amyotrophic lateral sclerosis
The national registry of veterans with amyotrophic lateral sclerosis
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DOI：
10.1159/000126910
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发表时间：
2008-01-01
影响因子：
5.7
通讯作者：
Oddone, E. Z.
中科院分区：
文献类型：
--
作者：
Allen, K. D.;Kasarskis, E. J.;Oddone, E. Z.
背景资料：退伍军人事务部（VA）合作研究计划已经建立了一个国家登记处的退伍军人肌萎缩侧索硬化症（ALS）。本文介绍了注册表的目标、方法和所涉及的示例。研究方法：通过国家退伍军人事务部电子病历数据库和全国范围内的宣传工作，在4年半的登记期内确定了患有ALS的美国退伍军人。通过病历审查确认诊断。注册者被要求参加DNA库。每6个月进行一次电话随访，以跟踪参与者的健康状况。结果如下：截至2007年9月30日，已有2,400名退伍军人同意参加登记，2,068人在医疗记录审查后被纳入，995人仍然活着并积极参与，1,573人同意参加DNA库。979名参与者已在登记研究中入组至少1年，497名参与者至少2年，205名参与者至少3年。14项研究已被批准将登记数据用于流行病学、观察性和干预性方案。结论：该登记已被证明是一个成功的模式，用于识别大量患有相对罕见疾病的患者，并将他们纳入多项研究，包括遗传方案。版权所有（c）2008 S. Karger AG，巴塞尔。
Background: The Department of Veterans Affairs (VA) Cooperative Studies Program has established a National Registry of Veterans with Amyotrophic Lateral Sclerosis (ALS). This article describes the objectives, methods, and sample involved in the registry. Methods: United States military veterans with ALS were identified through national VA electronic medical record databases and nationwide publicity efforts for an enrollment period of 4 1/2 years. Diagnoses were confirmed by medical record reviews. Registrants were asked to participate in a DNA bank. Follow-up telephone interviews are conducted every 6 months to track participants' health status. Results: As of September 30, 2007, 2,400 veterans had consented to participate in the registry, 2,068 were included after medical record review, 995 were still living and actively participating, and 1,573 consented to participate in the DNA bank. 979 participants had been enrolled in the registry for at least 1 year, 497 for at least 2 years, and 205 for at least 3 years. Fourteen studies have been approved to use registry data for epidemiological, observational, and interventional protocols. Conclusion: This registry has proven to be a successful model for identifying large numbers of patients with a relatively rare disease and enrolling them into multiple studies, including genetic protocols. Copyright (c) 2008 S. Karger AG, Basel.