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UPDR is expanding. Data integration from Common Spirit and Intermountain Health is underway.

Utah Parkinson’s Disease Registry

The Utah Department of Health and Human Services in conjunction with the University of Utah is pleased to offer aid resources to those affected by Parkinson's Disease

The University of Utah, Department of Neurology, worked with the Utah Department of Health and Human Services to launch the Utah Parkinson’s Disease Registry (UPDR).
The purpose of the UPDR is to develop a database of accurate historical and current information for research and public health purposes.
The collection of patient data is important for detecting disease incidence, and possible risk factors of PD and other related movement disorders. The UPDR is committed to collecting high quality data for population research only. Data security measures are in place to assure privacy and confidentiality of the information.

Learn more about the registry

View our strategic plan here

Mission Statement and Values

The mission of the Utah Parkinson’s Disease Registry (UPDR) is to obtain complete data of PD incidence and prevalence at county-resolution for the state of Utah. The organization’s purpose is threefold:
  1. Inform evidence-based program development
  2. Integrate with existing initiatives
  3. Collaborate with community and research partners
The vision is for the UPDR to be a model registry for neurodegenerative diseases with unparalleled temporal and spatial resolution that improves the life of Utah residents with PD.
UPDR strives for excellence through precision, transparency, collaboration, integrity, and empathy

Importance of Tracking Parkinson's Disease Cases

Parkinson’s disease (PD) is a progressive brain disorder that affects movement. It is the second most common neurodegenerative disease after Alzheimer’s. PD is classified as a movement disorder, impacting control of movements, posture, and gait.
  • The primary symptoms include:
  • Tremor
  • Rigidity (stiffness)
  • Bradykinesia (slowed movement)
  • Postural instability
Symptoms often begin gradually and can make daily activities harder over time. While PD typically affects people over 60, younger-onset cases can occur. Additional symptoms may include depression, anxiety, trouble swallowing or speaking, urinary problems, constipation, skin issues, and sleep disturbances.
Diagnosis is based on medical history and neurological exams. While tests like brain scans or lab work can rule out other conditions, no definitive test for PD currently exists, though advancements are underway.
In the U.S., Parkinson’s costs nearly $25 billion annually, including medical care and lost income. Medications average $2,500 per year, and Deep Brain Stimulation surgery can cost up to $100,000 per patient.

Parkinson's Treatment

While there is no cure for Parkinson’s disease, treatments can help alleviate symptoms and improve quality of life.
Medications:
Levodopa is the most effective treatment for motor symptoms. Taken orally, it crosses the blood-brain barrier and is converted into dopamine. Other medications may be prescribed based on individual needs.
Surgery:
Deep Brain Stimulation (DBS) is the most common surgical option. Thin electrodes are implanted into specific areas of the brain to reduce motor symptoms like stiffness, slowness, and tremor.
Exercise:
Regular aerobic exercise has strong evidence for slowing PD progression and improving overall fitness. Programs like Rock Steady Boxing, Dance for PD, and LSVT Big and Loud Therapy are particularly beneficial.
PD patients treated by a neurologist—specialists in central nervous system disorders—often experience better outcomes. Regular exercise and a multidisciplinary approach to care are highly encouraged for all individuals with PD.