国家肌萎缩侧索硬化症登记处：一种研究招募工具。
The National ALS Registry: a recruitment tool for research.
作者信息
Malek Angela M, Stickler David E, Antao Vinicius C, Horton D Kevin
机构信息
Department of Neurosciences, Medical University of South Carolina, 135 Cannon Street, Room 305L, Charleston, South Carolina, 29425, USA.
出版信息
Muscle Nerve. 2014 Nov;50(5):830-4. doi: 10.1002/mus.24421. Epub 2014 Sep 24.
INTRODUCTION
Subject recruitment is critical for understanding fatal diseases like ALS, however linking patients with researchers can be challenging. The U.S. population-based National ALS Registry allows recruitment of persons with ALS (PALS) for research opportunities.
METHODS
The Registry's Research Notification Mechanism was used to recruit PALS aged ≥21 years; participants completed a Web-based epidemiologic survey. PALS (n = 2,232) were sent an email describing the study, and 268 surveys were completed.
RESULTS
The mean age (± SD) of eligible participants was 57.7 ± 9.3 years for men and 61.5 ± 8.9 for women. Most were men (63%) and Caucasian (92%). Of 256 potentially eligible participants, 37.5% (n = 96) returned an authorization to disclose protected health information. ALS was confirmed for 94% (83/88) from physician responses.
CONCLUSIONS
This analysis demonstrates the National ALS Registry's usefulness in recruiting PALS for research. This recruitment source can potentially foster the discovery of better treatment options and therapies, and of prevention strategies.
引言
招募受试者对于了解像肌萎缩侧索硬化症（ALS）这样的致命疾病至关重要，然而将患者与研究人员联系起来可能具有挑战性。美国基于人群的国家ALS登记处允许招募ALS患者（PALS）以获得研究机会。
方法
登记处的研究通知机制用于招募年龄≥21岁的PALS；参与者完成了一项基于网络的流行病学调查。向2232名PALS发送了一封描述该研究的电子邮件，共完成了268份调查问卷。
结果
符合条件的参与者的平均年龄（±标准差），男性为57.7±9.3岁，女性为61.5±8.9岁。大多数是男性（63%）和白种人（92%）。在256名潜在符合条件的参与者中，37.5%（n = 96）返回了披露受保护健康信息的授权。根据医生的回复，94%（83/88）的患者被确诊为ALS。
结论
该分析证明了国家ALS登记处在招募PALS进行研究方面的有用性。这种招募来源有可能促进发现更好的治疗选择和疗法以及预防策略。
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