- The Utah Department of Health is looking into reports of a cluster of Parkinson's disease cases in West Valley City.
- The department is pulling together a team and gathering data to confirm if the rate is abnormally high, and if so look for a cause.
- Utah has the highest death rate from Parkinson's disease in the country, and a disease registry could help find the cause.
WEST VALLEY CITY — The Utah Department of Health and Human Services is looking into a tip that a neighborhood in West Valley City may have an unusually high number of Parkinson's disease diagnoses.
Sydnee Christiansen, an epidemiologist for the healthy aging program in the department, said that over the last month since the tip came in, they have been assembling a team to review the data.
The department is not yet ready to confirm that the number of cases is unusually high or that, if it is, the prevalence is not due to the neighborhood having a higher number of people with risk factors — like being white, elderly, veterans exposed to Agent Orange, or people with careers that led to large amounts of chemical exposure.
A man reached out whose wife had been diagnosed with Parkinson's disease, and he reported hearing of many other cases within the same area, from 3500 South to 4100 South and between 5600 West and 4400 West.
"He was just a concerned community member and was very kindly asking for us to look into his community," Christiansen said.
This sort of investigation, she said, is something the Department of Health and Human Services is familiar with for cancer, but this is the first time it has been asked to do an investigation for Parkinson's disease.
"So much of public health starts when somebody says 'there's something wrong,' and so we always want to take those cases seriously," she said. "We appreciate our community members reaching out to us and caring about their communities. That's one of the great things about Utah is we care so much about the people around us and our families."
Utah leads in Parkinson's disease deaths
Christiansen said the healthy aging program at the health departent typically provides resources for people with Parkinson's disease. There is a lot of research aimed at finding a cure or a way to prevent the onset, but no proven answers, she said.
Utah has had the highest death rate from Parkinson's disease in the country over the past decade, and it has been in the top nine of the last 10 years. Parkinson's is a neurodegenerative disorder that can cause people to struggle to move or speak; it is often associated with tremors and loss of balance.
Utah's elderly population is expected to double by 2065, and as the population increases, it is likely Parkinson's disease-related deaths will increase as well.
"It is somewhat concerning to look at your community and say … 'Is this common?' And unfortunately, in Utah, it kind of is," Christiansen told KSL.
She said Utah's population mirrors risk factors for Parkinson's with a high number of white or caucasian and elderly individuals. People living in areas with poor air quality also have a 56% higher risk of developing Parkinson's, according to the health department.
The high rate of Parkinson's deaths, Christiansen said, could just be due to Utah being an age-friendly and active state. People are living longer, healthier lives in Utah, which can mean more cases of conditions that typically affect the elderly.
Utah's health department is gathering data to confirm what is actually causing the higher rates.
"If we're leading the nation in mortality, we should also lead the nation in answers," Christiansen said.
The registry — how you can help
Christiansen said the Utah Parkinson's Disease Registry, which includes over 13,000 people, is an effort to identify patterns and help researchers pinpoint why the state consistently tops the list. She said Utah wants to be a frontrunner in finding answers about Parkinson's.
"If we want to help our own citizens, we need to understand why this is going on," Christiansen said.
She explained that a law requires Parkinson's disease cases to be reported within a year of diagnosis. Utah's larger health systems are registering their patients, but some smaller clinics aren't there yet.
She invited those affected to make sure their doctor, or their loved one's doctor, entered their diagnosis in the registry, and to ensure the registry has a record of when their symptoms started and when they were diagnosed.
"It's really critical for us to be able to look at the data and be able to read their story through those lines," she said.
According to Christiansen, it could take the health department time to gather information about the West Valley neighborhood's cases — from people familiar with Parkinson's disease, the registry, and representatives from the state and county health departments — but having good data is important for getting useful results.
She said they expect to have some answers for the community member who reported the cases in roughly two months.
Research into Parkinson's disease is still in its early phases, according to Christiansen. She said many studies have been published in the last 10 or 15 years, and research on environmental exposures, such as chemicals, is even newer.
