A new Missouri law will create an online registry for those who have Parkinson’s Disease.
“Parkinson’s affects a million Americans,” said Rep. Travis Smith, R-Dora, who is the bill’s sponsor. “It’s a terrible disease because the person who has the disease still has all their brain functions, but their body isn’t working correctly and it’s almost like they’re locked inside of a cell. Growing up, we always had a family friend that would come over for thanksgiving, and I saw how much trouble she had to go through. That was my driver for the bill.”
Under the law, a registry would be established in 2024 to collect data about Parkinson’s Disease in Missouri.
“We’re getting information from Parkinson’s patients, finding out where they lived, where they worked, what they did and hopefully getting that information, putting together the doctors and the University of Missouri can somehow come up with some kind of coalition to find out what is causing this because right now no one knows what Parkinson’s is,” Smith said.
For those who are concerned over their data being placed online, patients diagnosed must be notified in writing and orally about the collection of the information and patient data, but residents will not be forced into participating in the survey.
“Your name is not included,” according to Smith. “For instance, mine would be a white, 55-year-old male from southwest Missouri. It’s not going to be Travis Smith. If I want to opt out of it, I can. Doctors and the medical community are trying to use this information so hopefully we can come up with a cure for Parkinson’s.”
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