The Utah Parkinson Disease Registry (UPDR.org) was launched last week in an effort to understand an apparent rise in PD by 30 percent over the last ten years in Utah, and to uncover causes of the disease. Effective March 12, 2015, the Utah State Board of Health requires that health care providers report cases of PD and related movement disorders. Because Utah has one of the highest rates of PD in the nation, it is uniquely poised to contribute toward a new understanding of the disease.
The first computerized state registry, UPDR is run by the Department of Neurology at the University of Utah School of Medicine and Utah State Board of Health with bioinformatics support from the Utah Center for Clinical and Translational Science.
As many as one million Americans have Parkinson's Disease, a progressive brain disorder that often starts as a tremor but over time can lead to muscle rigidity, and difficulty walking, talking, and completing simple tasks. Even though it is the second most common neurodegenerative disease following Alzheimer's disease, basic information about PD is lacking, such as whether it affects ethnic or other population groups differently, and if patterns of disease are changing.
"The PD registry represents a great step forward in the epidemiology of PD and will allow us to understand genetic and environmental causes," says Stefan M. Pulst, M.D., professor and chair of neurology at the University of Utah School of Medicine.
The registry is the culmination of a three-year effort led by Pulst and supported by philanthropists from Zions Bank, the Callister Foundation, and the I.J. and Jeanne Wagner Charitable Foundation. In 2013, the Utah State Legislature passed a concurrent resolution urging the Utah State Board of Health to register PD. A strength of the resolution was knowing that registry information could one day be combined with medical and public health records housed in the Utah Population Database, a powerful means to identify potential genetic causes of PD, and associated epidemiological trends.
"Because of the combination of the records we have in Utah, our large older population with Parkinson's disease, and our superb medical center at the University of Utah, I think this is the best place to discover the genetic and environmental causes of the disease," said philanthropist Lou Callister, a partner in the law firm Callister, McCullough & Nebeker.
Besides increasing an understanding of the disease, information gained from the registry will aid in planning for early diagnosis, developing health education for patients and providers, and providing correct medical or surgical therapy health requirements.
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