SALT LAKE CITY — In March 2015, the Utah Department of Health issued a rule that required health care providers to report cases of Parkinson disease and related movement disorders via the Utah Parkinson Disease Registry.
Now, more than a year later, 1,566 Utahns with Parkinson’s disease have joined the registry, sharing valuable information about their diagnosis.
“The Utah Parkinson Disease Registry is one of the first computerized registries of its kind in the country,” Allyn Nakashima, state epidemiologist at the department, said in a statement. “Public health surveillance of this kind is absolutely critical for not only understanding the genetic and environmental causes of (the disease), but to better understand the extent of the disease across the state and across different populations.”
Although the registry is a collaborative effort with the University of Utah’s department of neurology and the Center for Clinical and Translational Science, the health department will make registry data available to all interested researchers.
Rebecca Starks, outreach director for the Mountain West Parkinson Initiative at the U. neurology department encourages individuals living with Parkinson’s disease or their families and caregivers to participate in the registry.
“You don’t have to wait for your health care provider to enter your information in the registry. By participating, you are helping to provide important clues about the causes of the disease, as well as helping to ensure adequate health care resources are available for all individuals impacted by (Parkinson’s disease),” Starks said.
To report a diagnosis of Parkinson’s disease, visit updr.org. Reporting by patients themselves is encouraged but voluntary. The registry collects some identifying information to avoid double reporting by health care providers and patients. The form collects information such as demographic data, current address, birth data and residence history. It is basic and should only take a few minutes to complete.
Parkinson's disease is the second most common neurodegenerative brain disorder following Alzheimer’s disease, yet basic information about it is missing, such as whether it affects certain populations differently.
Parkinson’s disease often begins with tremors but over time can lead to muscle rigidity, difficulty walking, talking and completing simple daily tasks. The disease affects 1 in 100 people over 65.
While there is no known cure, advances in research are raising realistic hopes of halting progression, restoring function and even preventing the disease altogether.
To date, approximately 21 percent of registrants reported symptoms of Parkinson’s disease at age 50 or younger. Nationally, most individuals with the disease are 60 or older at the time of diagnosis.
In Utah, among those in the registry, the average age of diagnosis is 64 years old. Data from the registry shows the time from symptom onset to diagnosis was nearly three years.
Although comparisons with other states about onset of symptoms to diagnosis is difficult to obtain, this time span was much longer than expected.