Parkinson Disease Prevalence Severely Underestimated: Parkinson's Foundation Prevalence Project

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Findings from the study will hopefully attract more attention and funding from state and federal government and the pharmaceutical industry.
Findings from the study will hopefully attract more attention and funding from state and federal government and the pharmaceutical industry.

The number of people living with Parkinson disease (PD) has been severely underestimated for years, according to new data revealed in a Parkinson's Foundation study.1 The Parkinson's Foundation “Parkinson's Prevalence Project” estimates that within 2 years, 930,000 people in the United States will be living with the condition; that number is anticipated to rise to 1.2 million by 2030.2 The new estimate is almost twice as high as the original count from a 1978 study that had historically been the only other point of reference.3

The findings of the landmark Parkinson's Prevalence Project will help attract more attention from federal and state government, as well as the pharmaceutical industry, to the growing urgency of addressing PD.

About the Parkinson's Prevalence Project

Recognizing significant variations and even contradictions in prior estimates, the Foundation initiated the study in 2014 to get a better perspective on the prevalence of the disease. Researchers combined data from 4 different regions across North America: California, Minnesota, Hawaii, and Ontario, Canada. To help ensure accuracy, they compared these estimates to nationwide Medicare data. After this, they combined data using a multistudy sampling strategy whereby large populations were divided into smaller clusters to get accurate numbers that are then applied to an entire population.

Without a doubt, the Parkinson's Prevalence Project was critically necessary; the original estimate from 1978 extrapolated data for the number of people with PD based on 26 cases of the disease in a rural Mississippi county.

The study addresses 2 central questions in an attempt to establish the epidemiologic prevalence of PD in the United States:

  1. Is the prevalence of PD uniform throughout North America, or does it vary by state and/or geography?
  2. What do the data reveal about the prevalence of PD and about the disease itself?

Key findings include:

  • Men are more likely to have PD than women
  • The number of those diagnosed with PD increases with age, regardless of gender
  • The prevalence of people diagnosed with PD varies by region; study researchers will devote more time to find out how

Practical Applications

Prevalence estimates of PD will bring significant value to public health planning. Access to updated data can ultimately help establish the appropriate amount of money and resources that should be allocated toward helping treat people with PD in every state.

Similar to such diseases as Alzheimer's that pose significant healthcare burdens, PD presents a formidable challenge in terms of a growing aging population over the coming decades.

As suggested in a 2017 study published in JAMA Neurology4 by 2 Parkinson's Foundation Center of Excellence clinicians, a PD pandemic will occur as the global population ages. Expecting a spike in the number of people diagnosed with PD worldwide, major efforts are underway to manage the healthcare burden over the coming decades, particularly for diseases that are more likely to be diagnosed with age, such as PD.

Why the Parkinson's Prevalence Project is Important

Parkinson's Foundation Prevalence Project data confirm the growing importance of ensuring optimal, expert care and treatment for people with PD, which would help future caregivers and ease the strain on health and elder care systems. By supporting this study, the Foundation works to better understand PD with the goal of solving the challenges presented by this disease. Establishing prevalence numbers and using them to educate PD communities and influence legislation will help the Foundation provide aptly tailored resources, outreach, and advocacy to the underserved PD populations across the nation.

More information about the study and what it means for the Parkinson's community is available at Parkinson.org/PrevalenceProject.

James Beck, PhD, is the chief ​scientific officer of the Parkinson's Foundation. He can be reached at jbeck@parkinson.org.  To learn more about the work of the Parkinson's Foundation, visit www.parkinson.org or call 1-800-4PD-INFO.

References

  1. Marras C, Beck JC, Bower JH, et al. Prevalence of Parkinson's disease across North America. NPJ Parkinsons Dis. 2018;4:21.
  2. Parkinson's Prevalence Project.  Parkinson's Foundation.  Available at: http://www.parkinson.org/Understanding-Parkinsons/Causes-and-Statistics/Statistics. Accessed August 6, 2018.
  3. Pearce JM. Aetiology and natural history of Parkinson's disease. Br Med J. 1978;2(6153):1664-1666.
  4. Dorsey ER, Bloem BR. The Parkinson pandemic—a call to actionJAMA Neurol. 2018;75(1):9-10. 
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