The Argeo Paul Cellucci ALS Registry of Massachusetts is the direct result of requests by ALS patients, families, and patient advocacy groups, leading to a legislative mandate that established a statewide surveillance system for ALS (M.G.L. c. 111, § 25A). The ALS Registry collects statewide information on patients with ALS identified by neurologists, hospitals, ALS clinics, and vital records.
State public health officials and researchers can use data from the MA ALS Registry to inform epidemiologic studies on the causes of ALS. The data are especially helpful in evaluating trends over time in the incidence and prevalence of ALS and in identifying geographic and demographic patterns.
To protect patient privacy, all information in the MA ALS Registry is kept secure, yet access to data may be granted for approved research studies that could not otherwise be easily conducted.
As the first and only statewide system in the country to have complete capture of all ALS cases, the registry produces high-quality, unbiased, and reliable surveillance data.