(Salt Lake City, UT) – 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 (PD) 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,” said Allyn Nakashima, state epidemiologist at the UDOH. “Public health surveillance of this kind is absolutely critical for not only understanding the genetic and environmental causes of PD, 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 Department of Neurology and the Center for Clinical and Translational Science, the UDOH will make registry data available to all interested researchers.
Parkinson disease (PD) 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. PD often begins with tremors but over time can lead to muscle rigidity; and difficulty walking, talking, and completing simple daily tasks. The disease affects one in 100 persons over the age of 65 years. While there is no known cure for PD, 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 PD at age 50 or younger. Nationally, most individuals with PD are age 60 or older at the time of diagnosis. In Utah, among those in the registry, the average age of diagnosis was 64 years of age. Data from the registry showed 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.
Rebecca Starks, outreach director for the Mountain West Parkinson Initiative at the UofU Department of Neurology encourages individuals living with PD or their families and caregivers to participate in the Utah PD 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 PD.”
To report a diagnosis of PD visit, http://updr.org. Reporting by patients themselves is encouraged, but voluntary. The registry collects some identifying information in order 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.
Individuals and families who want to learn more about PD including the latest treatment and medication options available, caregiving issues, and exercise programs designed specifically for those living with PD, may attend the Utah Parkinson Disease Symposium on Saturday, October 22, 2016 from 9 a.m. to 1 p.m. More information is available at the Mountain West Parkinson Initiative website, http://www.mwparkinson.org/.
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Jenny Johnson, UDOH
(o) 801-538-9416 (m) 385-290-7826
Rebecca Starks, UofU