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 2003 legislative mandate in the Massachusetts General Laws, Chapter 111 (Public Health), Section 25A that establishes a statewide surveillance system for ALS. The directive states that “the Department of Public Health may establish an ALS registry, by areas and regions in the Commonwealth, with specific data to be obtained from urban, low and median income communities, and minority communities of the Commonwealth.” The Registry was created in 2007 following planning, focus groups, and pilot evaluations and is operated by the Bureau of Environmental Health of the Massachusetts Department of Public Health (MDPH). It was re-named by decree of the Massachusetts Senate in May 2013 for the late Argeo Paul Cellucci, the former Massachusetts governor who was diagnosed with ALS in 2011.
MDPH has worked with ALS patients and their families, neurologists, and patient advocacy groups to develop a sustainable system to meet researchers’ needs. The result is a first-in-the-nation registry that allows for ascertaining all persons in the Commonwealth with ALS. Patient reports come from Massachusetts health care providers who submit information each year, in accordance with federal and state privacy protection regulations, on residents who are being treated for or have been diagnosed with ALS.
The Registry is a tool that can be used to establish ALS incidence and prevalence; evaluate geographic and demographic trends among patients; and provide complete, high-quality data that allows for follow-up with patients, physicians, and caregivers for additional data collection. State public health officials and researchers use the Registry to inform epidemiologic studies on the causes and treatment of ALS. The Registry contains information that is secure to protect the privacy of ALS patients while allowing researchers access to data for studies that could not easily be conducted otherwise.