Utah Parkinson’s Resources

Goal 1: Increase health systems reporting Parkinson’s Disease diagnosis

Strategies / Activities

• Contact all neurologists in the state and inform on compliance of the PD reporting rule.
• Gather incidence and prevalence for Parkinson’s Disease and related diseases in the state by county or zip code.
• Provide instructions and processes to import data from health systems (e.g. University of Utah, Intermountain Health, CommonSpirit and other Utah health systems).
• Raise awareness of the reporting rule at support groups, academic conferences, and PD outreach activities (see Goal 4).

Deliverables / Outcomes

• Provide state-wide incidence data for 2023 (P1).
• Provide state-wide prevalence data for 2023 (P2).
• Report county-level incidence in meaningful ways in collaboration with the Utah Department of Health and Human Services according to data reporting rules (P1).
• Provide a heat map of prevalence and incidence of Parkinson’s Disease and related diseases by zip code and county in compliance with UDHHS rules (P2).

Timeline

• Priority 1: within next 2 years (2026)
• Priority 2: within next 2–4 years (2026–2028)
• Priority 3: within next 5 years (2029)

Goal 2: Maintain and enhance the system and quality of data

Strategies / Activities

• Double verification of data.
• Continuous review of records.
• Address duplicated records.
• Establish a versatile, multi-dimensional, and secure database.
• Develop criteria for case ascertainment and harmonize with best practices from other registries.
• Ensure inclusion of rural populations and NIH-designated disparity populations.
• Maintain data in compliance with HIPAA and data security regulations.

Deliverables / Outcomes

• Updated database implemented (P2).
• Clean, high-quality and accurate data.
• Yearly report on data quality metrics (P2).

Timeline

• Priority 1: within next 2 years (2026)
• Priority 2: within next 2–4 years (2026–2028)
• Priority 3: within next 5 years (2029)

Goal 3: Increase use of the registry and findings

Strategies / Activities

• Create a process for research and evaluation requests and encourage research collaboration to improve understanding of the disease.
• Link the UPDR with other state and national health databases to expand data elements.
• Integrate evidence-based PD programming in Utah.
• Create or modify evidence-based programs to support patients with PD.
• Continuously evaluate barriers to earlier diagnosis and quality of life among PD patients in Utah.
• Leverage registry to reduce barriers for clinical trial participation for PD patients and increase visibility of PD in Utah for pharmaceutical trial sponsors.

Deliverables

• Refer Parkinson’s patients to evidence-based falls prevention programs.
• Use data to guide populations with the greatest need for evidence-based PD programming.
• Literature review compiling evidence-based practices shown to support PD patients.
• Link data to the Utah Population Database, UDHHS vital statistics, Michael J. Fox Foundation, and other state and national Parkinson’s databases.
• Establish a data structure that allows researchers to analyze data while ensuring compliance with IRB and RGE guidelines.
• Based on prevalence estimates, modify existing programs by adding evidence-based programming by county.
• Identify lag-time from onset of the first symptom to diagnosis by area and population subgroups and identify main barriers to quality of life using surveys and epidemiological trends.

Timeline

• Priority 1: within next 2 years (2026)
• Priority 2: within next 2–4 years (2026–2028)
• Priority 3: within next 5 years (2029)

Goal 4: Increase education, training, and outreach about Parkinson’s Disease and related diseases and the registry

Strategies

• Implement and provide education resources to patients, caregivers, and providers statewide.

Deliverables / Outcomes

• Provide and maintain information and resources on PD and Utah PD resources through updr.org.
• Highlight UPDR at annual PD symposium for patients and caregivers.
• Newsletters to PD patients and caregivers.
• Presentations at regional, national, and international meetings.