Utah Parkinson's Disease Registry Update
Apr 22, 2020 12:00 AM
To date, the Utah Parkinson’s Disease Registry (UPDR) has collected data for over 7,900 cases of Parkinson’s disease (PD). A powerful means to identify potential genetic causes of PD and associated epidemiological trends, the database aids in planning for early diagnosis, developing health education for patients and providers, and providing correct medical or surgical therapy health requirements.
Under the Parkinson’s Disease Reporting Rule, R384-300 select information on cases is maintained such as: residence by zip code, demographic information, and disease onset and diagnosis history. These data points for all registrants are reviewed annually, a growing subset of records are reviewed by multiple raters, and data sources include chart review of all University of Utah and Intermountain records and select records from other medical systems.
Efforts are ongoing to access records from the VA system, one small independent clinic, and the Utah Department of Health maintained UHIN health information exchange system. Efforts to collect data from self-reported cases, pharmacists, and community members are ongoing through outreach activities to raise awareness of the registry.
Analysis of Utah specific PD risk factors are underway and the Parkinson’s disease registry welcomes research proposals to utilize its data. More information on the Utah Parkinson’s Disease Reporting Rule and registry is available at www.updr.org