ALS registry information to be released
Boston Globe
State health officials are poised to soon release their report on information collected in a statewide amyotrophic lateral sclerosis registry, created in 2008 to track the neurodegenerative disease often referred to as ALS or Lou Gehrig’s disease.
Christine Legere
July 5, 2009
MIDDLEBOROUGH
ALS registry information to be released
By
Christine LegereGlobe Correspondent / July 5, 2009
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State health officials are poised to soon release their report on information collected in a statewide amyotrophic lateral sclerosis registry, created in 2008 to track the neurodegenerative disease often referred to as ALS or Lou Gehrig’s disease.
Residents in Middleborough and across Southeastern Massachusetts will find the upcoming report, to be released sometime this summer, of particular interest, since the region is known to contain hot spots for ALS.
Prevalence estimates, developed by the state Department of Public Health in 2007, showed there were 4 to 6 cases of ALS per 100,000 statewide, compared with 9.5 cases per 100,000 in Plymouth County and across Southeastern Massachusetts.
ALS, which is almost always fatal, deprives its victims of the ability to control their movements, speech, and eventually their breathing. Most patients die within two to five years of diagnosis.
Many Middleborough residents have long thought there is a connection between the town’s high rate of ALS, particularly in the Everett Square area, and the proximity of several known contam inated sites. Most of the 27 cases that residents have counted, plus a number that have since been reported to the registry, are clustered around the site of the former George E. Keith factory north of Sumner Street that burned down in a four-day fire in 1974, Middleboro Plating on Cambridge Street, and a property adjacent to the plating company where chemicals were handled and shipped.
Contamination at those sites has been confirmed either by the federal Environmental Protection Agency or the state Department of Environmental Protection. A fourth property, Rockland Industries, lies down-gradient of the three sites and is listed by DEP as a Tier IA contaminated site.
A spokesman for the ALS Association’s Massachusetts chapter called the ALS Registry’s upcoming report “a victory’’ for advocates, as it will be the first time any of the information contained in the registry, the first in the nation, is made available.
The report will document the rates of the disease and ultimately track any trends across the state. Once released, it will be placed on the Department of Public Health’s website at
www.mass.gov/dph/environmental_health.
Information for the registry is supplied by neurologists, major hospitals, nursing homes, and hospices, who report on the gender, age, address, and diagnosis of each person with ALS. Information on some 700 cases was provided to the registry in its opening year. Wherever clusters of the illness are detected, health officials will search for possible environmental causes. And if a definite link can be established, the focus can turn to developing ways to control and prevent those causes, officials said.
“Hopefully, the registry is going to unlock a lot of secrets about clusters of ALS and their locations,’’ said ALS Association spokesman Richard Lombardo.
Middleborough selectmen chairman Patrick Rogers said it is important that local officials collect as much information on ALS as possible, so they are able to “determine just where the issues lie.’’ He added the Middleborough Citizens Environmental Health Impact Committee has served as liaison between the town and the state, conveying information related to the prevalence of ALS in town.
Lombardo called the registry long overdue. “We believe the pathway to a cure is strongly tied to the registry, as clusters of the disease are found and their locations studied,’’ he said.
Suzanne Dube, who chairs the Middleborough Citizens Environmental Health Impact Committee, recently outlined other ALS-related efforts. State health officials are reviewing records of the state Department of Environmental Protection regarding chemicals found on the four contaminated sites in Middleborough. Their aim is to identify common denominators.
Christine Legere can be reached at
christinelegere@yahoo.com.