Quantifying a non-notifiable disease in the United States: The National Amyotrophic Lateral Sclerosis Registry model

Affiliates D. Kevin Horton [1], Paul Metha [1], and Vinicius C. Antao [1]


[1] Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Sciences

Journal JAMA
Summary This paper sums up efforts made to form the National ALS Registry. The registry employs a two-pronged approach to identify all newly diagnosed and existing ALS cases. The first approach, launched in 2009, accesses existing national administrative databases and employs a pilot-tested algorithm to separate patients in those with definite ALS, possible ALS, and no ALS. Those identified with definite ALS were entered into the National ALS Registry, those with possible ALS are screened further, and those with no ALS are excluded from the registry. The second approach includes a secure web portal for ALS patients to self-identify and self-register.
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