BEACHWOOD, Ohio — Ohio is set to join nearly a dozen other states in establishing a Parkinson's Disease registry, as local advocates point to a rise in the number of cases.
The amendment in Ohio's 6,000-page budget, calls for the Ohio Department of Health to "establish and maintain a Parkinson's disease registry for the collection and monitoring of the incidence of Parkinson's disease in Ohio" within the next two years.
The registry comes as many across the state admit that basic questions surrounding the deteriorating brain disorder, such as how many cases are there, what causes the disease, and how can it be treated.
"There’s really no clear cut and dry number that says there’s X number of people in Northeast Ohio that suffer from Parkinson’s Disease," said Cathe Schwartz, CEO of the nonprofit InMotion, which helps people manage their Parkinson’s disease. "If you can’t count, if you can’t measure the number of people out there with Parkinson’s, it’s really difficult to figure out what our next steps should be in terms of a cure, in terms of looking at causes, and in terms of helping people live with this disease."
Rough estimates from the Parkinson's Foundation said nearly 1 million people are living with Parkinson's, with about 30,000 of those in Ohio.
Fred Discenzo serves as vice president of Ohio Parkinson’s Foundation Northeast Region and points out that the little data that is out there doesn’t show a clear picture.
"It’s not uniform across the country or regions," he said. "There are pockets of increasing incidents and we don’t know why. It’s rapidly increasing across the country and worldwide and now Ohio is one of the leaders taking a look at what might be causing this and what are some regions or environmental factors causing this increase."
According to the American Parkinson Disease Association (APDA), Ohio, along with Maryland, Missouri, and Nevada, all passed legislation to establish registries during their 2023 legislative sessions.
They will join Nebraska, Utah, and California, which already have registries. Since 2007, Washington has operated with a voluntary registry. South Carolina and West Virginia are in the process of creating their own registries after each state passed legislation. Several other states including New York and Massachusetts are still considering legislation tied to establishing a Parkinson's registry.
State Rep. Mary Lightbody, a Pepper Pike native, was among those lawmakers who pushed for the registry during the previous legislative session.
"The medical doctors and researchers are going to be able to help us identify where this disorder is happening and what are the triggers for it," she said.
Death rates for Parkinson’s disease in Ohio increased 50% from 2011 to 2020
A 2022 report from the Ohio Department of Health reiterated that "it is difficult to know exactly how many people have PD because there is no national registry or data collection system." As a result, ODH told News 5 it commissioned the report to learn more about the burden and abundance of the disease across the state.
The report focused primarily on mortality tied to Parkinson's, not the prevalence of the disease.
That same report detailed how 1,651 Ohioans died from Parkinson's disease in 2020, with a death rate of 10.8 per 100,000 people, a rate 9% higher than the national average.
It found that men saw a 44% increase in Parkinson's death rates from 2011 to 2020, while women saw an increase of 51% PD death rates increased in Ohio by 50% overall, 44% among males, and 51% among females from 2011 to 2020 (Figure 3). This trend is partly due to the aging of the population; however, the reasons remain unclear.
When asked for further clarification on the upcoming registry, a spokesperson with the Ohio Department of Health said it was too soon to discuss specifics for this new development.
Clay LePard is a special projects reporter at News 5 Cleveland. Follow him on Twitter @ClayLePard or on Facebook Clay LePard News 5.
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