The National ALS Registry: a recruitment tool for research

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Affiliates Angela M. Malek [1], David E. Stickler [1], Vinicius C. Antao [2], and D. Kevin Horton [2]

 

[1] Department of Neurosciences, Medical University of South Carolina
[2] Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Science
Journal Muscle and Nerve
Summary This paper outlines the benefit of using the National ALS Registry as a recruiting tool for studies on persons living with ALS. Registry participants (n=2,232) were sent emails regarding a potential case-control study. 268 surveys were returned, of which, 96 returned an authorization to disclose protected health information. Concluding, the National ALS Registry is a useful tool for recruiting persons with ALS.
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