BURLINGTON, Vt. (WCAX) – Vermont is the second state in the country to create an ALS registry, joining Maine. The goal is to better understand its impact on the state and ultimately help with research.
Vermont has been keeping track of ALS cases since July due to new legislation.
As a result of Act 149, healthcare providers are required to report ALS cases to the Department of Health. They note that it’s difficult to understand or estimate the number of cases in the United States, and all the more difficult in a state that’s as small as Vermont.
In a state of over 600,000, early data collection shows there are at least 28 ALS patients in Vermont, but those numbers are likely to evolve as providers submit cases.
“Once they’re identified as having ALS, we can be referred to ALS centers, where there are clinics that specialize in ALS, and often the patients aren’t aware of this,” says Dr. Elijah Stommel, a neurologist working out of Dartmouth Hitchcock Medical Center.
The registry isn’t just for collecting numbers – it also could add context to these cases. Stommel says ALS has an environmental component that is still being explored.
“We’ll be able to start looking at the data carefully. We have maps of Vermont, New Hampshire, and parts of Maine, looking at environmental toxins and there are many of them polluting cyanobacterial toxins, air pollution, pesticides, heavy metals, and volatile organic pollutants. All these things can be mapped out on on geospatial maps and then we can overlay them with where the patients have lived,” said Stommel.
Dr. Stommel says there is a national registry, but it isn’t mandatory – so isn’t complete. Researchers are hoping to start looking critically at this data in about another year.
Stommel said, “If we’re able to risk factors and establish them, there might be a way to mitigate the disease.”
Health statistics director Jessie Hammond says while the data is still preliminary, they know at least 11 cases were diagnosed in 2022 and 7 in 2023.
“There have been some cases that were diagnosed prior to the required timeframe. Those case counts are really likely to change the process is new anytime there’s a new workflow,” said Hammond.
Hammond says this ALS registry is joining the ranks of other registries in the health department, including ones for cancer, birth defects, and immunizations.
There have also been conversations in New Hampshire to create an ALS registry, but it has yet to come to fruition.