For more than 20 years, health officials have known about a puzzling concentration of the neurodegenerative illness known as Lou Gehrig’s disease in the southeastern Massachusetts town of Middleborough. In the coming months, a study financed by the federal government and conducted by state environmental health scientists might answer the riddle of whether toxic waste from two Superfund sites in the town has caused the rare and usually fatal disease, which normally strikes just two of 100,000 people. Besides being a potential site for a casino operated by the Mashpee Wampanoag tribe, Middleborough was home to a metal plating plant and a chemical plant. Their industrial waste became Superfund sites that still have not been entirely cleaned up.

Middleborough, which has a cluster of cases of Lou Gehrig’s disease, is welcoming the start-up of a state registry to track occurrences of the nearly always fatal disease. The first-in-the-nation registry will chart cases of the illness known officially as amyotrophic lateral sclerosis, or ALS. Suzanne Dube heads a committee established by Town Meeting voters a year ago to look into the high incidence of ALS in town, and any possible connection to industrial hazardous waste sites nearby. The registry will provide health officials with a record of how many cases have occurred in a particular area. Common denominators may surface that would help lead experts to the causes of the illness and, hopefully, a cure. As a first step, state officials this month will send out questionnaires to all neurologists and ALS clinical centers, requesting information on ALS patients. Participation in the survey will be mandatory. A team of specially trained nurses will evaluate the records, and an epidemiologist will oversee surveillance of cases across the state. Because ALS can be difficult to diagnose, the state’s medical team will do follow-up checks whenever a diagnosis is uncertain. All data will be entered in a secured Department of Public Health database. Information on patients will include name, age, gender, where a person lives, has grown up and worked, family medical history, and what symptoms they show. State health officials have already identified Southeastern Massachusetts, and Middleborough in particular, as hot spots for the illness. A recent state study focused on possible connections between hazardous waste sites and ALS rates in Middleborough, as well as in Hingham, Rockland, Abington and Weymouth, which border the former South Weymouth Naval Air Station.

Sources: The Boston Globe, October 14, 2011 and January 20, 2008