Objective: To report the progress made in establishing the Utah Parkinson Disease Registry (UPDR.org).

Background: Precise epidemiological information about Parkinson’s disease (PD) and related conditions is difficult to obtain. This information is important for research, clinical care and resource planning. Nebraska became the first state in the United States (US) to establish a statewide registry for PD.

Method: In 2013, the Utah State Legislature passed a resolution urging the Utah Department of Health (UDOH) to make PD a reportable condition. In 2015, UDOH modified its reporting rules requiring that health care providers report cases of PD and related movement disorders. UPDR is an electronic registry run by the UDOH through a contract with the Department of Neurology at the University of Utah School of Medicine (with bioinformatics support from the Utah Center for Clinical and Translational Science) to collect and manage the data. UDOH retains ownership and all rights to the records in the Registry and manages the access to these data. Physicians, hospitals, clinics, pathology laboratories licensed in the state, nursing homes, and other facilities and health care providers are required to report to the Registry. In addition, there is voluntary self-reporting by patients. The reporting of cases of PD or related movement disorder that are diagnosed or treated in Utah is done through a website or by mail, within a year of the date of diagnosis.

Results: As of 2019, the UPDR contains 3,679 registered cases, corresponding to 2,945 unique, alive registrants living in Utah. The male/female ratio is 1.8. The distribution of current age is: <50 years = 3.0%; 50-59 = 7.3%; 60-69 = 20.6%; 70-79 = 35.9%; 80+ = 33.2%. A comparison of PD mortality shows that, in 2016, the age-adjusted death rate per 100,000 was 11.9 (95% CI 10.6-13.4) in Utah vs 8.1 (95% CI 7.9-8.1) in the US.

Conclusion: The available data, although preliminary, suggest that collection of data in this population will be important to further our understanding of the epidemiologic factors associated with PD in Utah.  The next steps would be to evaluate and improve the completeness of reporting and the quality of the data in the Registry. The opportunity exists to eventually link the UPDR to a population resource which includes the genealogy of Utah from the mid 1800s linked to statewide hospital and vital statistics data, which will allow unique investigation of genetic factors and interactions.

References: Tysnes OB, Storstein A. Epidemiology of Parkinson’s disease. J Neural Transm (Vienna). 2017 Aug;124(8):901-905. Bertoni JM, Sprenkle PM, Strickland D, Noedel N. Evaluation of Parkinson’s disease in entrants on the Nnebraska state Parkinson’s disease registry. Mov Disord 2006; 21: 1623–1626. Xu K, Alnaji N, Zhao J, Bertoni JM, Chen L-W, Bhatti D, Qu M. Comorbid Conditions in Parkinson’s Disease: A Population-Based Study of Statewide Parkinson’s Disease Registry. Neuroepidemiology 2018;50:7–17. Utah Death Certificate Database, Office of Vital Records and Statistics, Utah Department of Health. Population Estimates: National Center for Health Statistics (NCHS) through a collaborative agreement with the U.S. Census Bureau, IBIS Version 2016. U.S. Underlying Cause of Death Data: WONDER Online Database. Centers for Disease Control and Prevention, National Center for Health Statistics.

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