ALS study undergoing peer review
By CHARIS ANDERSON
Standard-Times staff writer
August 31, 2008 6:00 AM

For decades, Middleboro residents have lived under the specter of a terrible disease that seems to attack town residents in much higher numbers than normal.

The disease — amyotrophic lateral sclerosis, also known as Lou Gehrig's disease — and whether its high incidence in Middleboro can be tied to environmental causes is the subject of a study conducted by the state Department of Public Health.

Many of the town's ALS cases stemmed from the area around Everett Square, a heavily populated part of town adjacent to many former industrial factories.

Results of the study are still undergoing final peer review, but could be released by the end of the year.

Meanwhile, in January the state launched a first-of-its-kind ALS registry that will track incidences of the disease statewide.

Similar registries have been created for cancer, but Massachusett's registry is the first database across the country tracking ALS.

"We truly believe that the ALS registry is revolutionary in the potential that it has to find treatments and a cure for ALS," said Rich Lombardo, communications manager for the ALS Association's Massachusetts chapter.

Mr. Lombardo also is a member of the state's ALS Registry Advisory Committee, a group of people ranging from neurologists to elected officials, selected to guide implementation of the registry.

Across the U.S., about 5,000 people a year are diagnosed as having ALS, and about 20,000 people have the disease at any given time, according to statistics from the National Institute of Neurological Disorders and Stroke.

The disease affects nerve cells in the brain and the spinal cord and is nearly always fatal.

ALS is difficult to diagnose, and only about 10 percent of ALS cases have a genetic link. The other 90 percent are sporadic, or random.

That randomness has made the cause of the disease difficult to pinpoint. Creating a registry of information about all ALS cases in the state will ultimately allow researchers to sift through data, looking for commonalities, according to Mr. Lombardo.

The 90 percent that are "random, it won't be random anymore," he said.

Additionally, having a data repository will make it easier not only to identify possible clusters but also to determine the cause of those clusters, said Marybeth Barker, a social worker with a master's degree in public health who is on the advisory committee.

"Sometimes, there are clusters that happen because of just randomness," she said. "And then there are clusters that may happen because there is something going on there, and it would be very good to understand the difference."

Although that kind of cutting-edge research is still in the future, "the first step really is collecting the data," Mr. Lombardo said.

The state's registry is in its first year of gathering data, according to Suzanne Condon, director of the state's Bureau of Environmental Health.

In January 2008, neurologists across the state were asked to report all cases of ALS diagnosed during 2007, Ms. Condon said.

Halfway through the year, about 88 percent of doctors contacted had already responded, a good participation rate, she said.

Data collection will continue each January, with information from the prior year, she said.

"Ultimately, we'll be publishing some kind of annual report on the incidence and prevalence of ALS across the state," Ms. Condon said.

"It would definitely be a tool for us in the same way the cancer registry is a tool."

Contact Charis Anderson at canderson@s-t.com.

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