Parkinson’s Foundation Prevalence Project Finds Number of People With Parkinson’s Severely Underestimated

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. In our latest research initiative, we established the Parkinson’s Prevalence Project to determine a more accurate representation of people living with PD today through a study called the Parkinson’s Foundation Prevalence Project.

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 will rise to 1.2 million by 2030.

"Our knowledge of Parkinson’s has changed significantly and so has our understanding of how many people have this disease,” said James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer and contributing author on the study. “This study 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.”

About The Study

The Parkinson’s Foundation formed the Parkinson’s Prevalence Project in 2014 to find an accurate estimate of PD prevalence because prior estimates were widely varied. The 1978 estimate extrapolated data for how many people in the nation have Parkinson’s based on 26 cases of PD in a rural Mississippi county. The new Parkinson’s Prevalence Project estimate is nearly double the 1978 study count.

The new 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 goal of the Parkinson’s Foundation Prevalence Project is to establish the epidemiological (the incidence, distribution and control of a disease) prevalence of PD throughout North America. The study establishes a more precise estimate of PD burden through combining data from four different regions across North America: California, Minnesota, Hawaii, and Ontario, Canada. Researchers then compared these estimates to nationwide Medicare data to ensure accuracy.

The study combined data using a multi-study sampling strategy, which means large populations were divided into smaller clusters to get accurate numbers that are then applied to an entire population.

5 Facts You Should Know About the Study

1. The 2018 Prevalence Project estimate draws from large and diverse populations.
2. The new study estimate is nearly double the 1978 study prevalence number.
3. By 2020, 930,000 people in the U.S. will be living with Parkinson’s.
4. 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.
5. The new study found that the prevalence of people diagnosed with PD varies by region. Study researchers will devote more time to find out how.

Next Steps

Prevalence estimates of Parkinson’s will prove vital in public health planning. Updated numbers can ultimately help establish how much money and resources should go towards helping treat people with PD in each state.

“Like Alzheimer’s disease, Parkinson’s disease affects primarily older individuals and poses a significant health care burden and a real challenge on how to care for the aging population over the coming decades,” said Connie Marras, MD, PhD, lead author on the study and movement disorder neurologist at the Movement Disorders Centre at Toronto Western Hospital, Parkinson’s Foundation Center of Excellence, and the Edmond J. Safra Program in Parkinson’s research.

The Importance of the Study

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 aptly tailored resources, outreach and advocacy to the underserved PD populations across the nation.

The entire study is available and was recently published in the Parkinson’s Foundation scientific journal, npj Parkinson’s Disease.

Read more about the study and what it means for the Parkinson’s community at Parkinson.org/PrevalenceProject.