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The National ALS Registry: A Recruitment Tool for Research
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Sep 24 2014
Source: Muscle Nerve. 50(5):830-834.
[PDF-315.26 KB]
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Alternative Title:Muscle Nerve
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Description:Introduction
Subject recruitment is critical for understanding fatal diseases like ALS, however linking patients with researchers can be challenging. The US 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.
Discussion
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.
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Pubmed ID:25111654
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Pubmed Central ID:PMC4206601
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