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.

Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive, fatal neuromuscular disease. It is characterized by a degeneration of motor nerve cells in the brain and spinal cord, leading to muscle weakness.

As the disease progresses, total paralysis and an inability to speak or swallow can result while—for the vast majority of individuals—the mind and senses remain unaffected.

No one knows what causes ALS. Researchers have been studying many factors that could be linked to it, such as heredity, environmental exposures, diet, and injury. We do know the following about ALS and its prevalence in the United States:

  • ALS is estimated to affect some 18,000 people in the United States at any given time.
  • The annual incidence is about 2 per 100,000 people.
  • The annual prevalence is about 4 to 6 per 100,000 people.
  • The mean duration of the disease is approximately three years.
  • ALS is about 20 percent more common in males than in females.
  • Age at onset varies, but ALS is most often seen in people between 40 and 70 years old.
  • The prevalence of ALS in Massachusetts is not significantly different from estimates of the national average.

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.

This information is provided by the Bureau of Environmental Health within the Department of Public Health.