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Causes & Statistics: Prevalence Project

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When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. This information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease. Key terms, like incidence and prevalence, are often used when talking about who has PD. 

Incidence: A measure of new cases arising in a population over a given period of time, typically incidence is measured as the number of people diagnosed per year. 

Prevalence: A measurement of all individuals affected by the disease at a particular time (for example, the number of people with Parkinson’s on March 19, 2018).

To calculate an accurate estimate of the prevalence of Parkinson’s throughout North America, the Parkinson’s Foundation formed the Parkinson’s Prevalence Project in 2014. Prior estimates were based on a small number of cases from areas that are not representative of the nation as a whole — like a previous study from 40 years ago that extrapolated the 26 people with PD in a rural Mississippi county as a benchmark estimate for Parkinson’s prevalence in the U.S.

In addition to finding the most comprehensive number to date, the new prevalence study sought to answer two main questions:

  1. Is the prevalence of PD uniform throughout North America or does it vary by study and/or geography?
  2. What will the data tell us about the prevalence of Parkinson’s and about the disease itself?

The new study draws from larger and more diverse populations. The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

Parkinson’s Prevalence Facts

  1. The last major PD prevalence study was completed in 1978.  
  2. The new study confirms that men are more likely to have Parkinson’s than women and that the number of those diagnosed with PD increases with age, regardless of sex.
  3. The new study found that the prevalence of people diagnosed with PD varies by region. Study researchers will now devote more time to find out how.

The Importance of Establishing Parkinson’s Prevalence Numbers

Parkinson’s Prevalence estimates will help the Parkinson’s Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.

The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinson’s research.

Parkinson’s Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinson’s care and treatment for people with Parkinson’s, 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 Parkinson’s with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinson’s Foundation scientific journal, npj Parkinson’s Disease.

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