Background: In collaboration with the Utah Department of Health, and funded by the State of Utah, the University of Utah Neurology Department founded the Utah Parkinson's Disease Registry (UPDR) in 2015 with the purpose of patient data collection of Utah residents with Parkinson's Disease (PD). The collection of this data starts with the patient, physician, family member, spouse/ partner, friend, or a hospital submitting the patient's information into the registry. Once in the registry, data analysts review each record to verify the patient's medical records to determine the date the patient's diagnosis date and the date of symptom onset. Data analysis will also determine if the patient is not eligible to be in the registry, if they live out of state, if they were not diagnosed with PD, or if they are no longer alive.
Objective: Collecting data allows researchers to establish potential risk factors, determine the efficacy of treatment, and ensure the healthcare needs of patients are taken care of.
Results: During the analysis of the registry, several trends have been observed, the time from symptom onset to diagnosis is higher for PD cases with onset before 50 years of age and patients residing in rural areas.
Conclusion: Surveillance including incidence and prevalence estimates by Utah region leads to an understanding of areas and subpopulations in need for health care services.