The Parkinson’s Outcomes Project captures the broadest and most inclusive patient demographics ever assembled in a Parkinson’s clinical study. Studying data from people with Parkinson’s who receive expert care at a Center of Excellence, helps the Foundation identify with ever-increasing precision exactly which factors lead to better outcomes for all people with Parkinson’s.
The charts below show what kind of data the study is continuously tracking and reflect information collected from 2009 to December 2018:
Parkinson’s Outcomes Project Participants Over Time
The Parkinson’s Foundation has consistently funded the study, increasing participant enrollment to more than 12,000 participants. Together, participants along with their doctors fill out a data collection form that tracks symptoms, lifestyle and overall quality of life.
There are patterns of progression in Parkinson’s disease that are defined in stages. The Parkinson’s Outcomes Project tracks people with PD using the Hoehn and Yahr scale, where stages one and two represent early disease, three is mid stage, and stages four and five are advanced Parkinson’s.
Parkinson’s is diagnosed more commonly in men than in women, thus more men are enrolled in the study than women. Women in the study are slightly older than the men enrolled and have slightly more advanced PD.
Young-Onset Parkinson’s Disease
The Parkinson’s Outcomes Project is the largest clinical study to date of people living with young-onset PD. More than 730 people diagnosed with Parkinson’s before the age of 40 provide the Foundation with unpresented insights into this population of people with PD.
The study tracks how long participants have lived with Parkinson’s. Study data led researchers to find multiple participants who have lived with Parkinson’s for more than 20 years and still have an exceptional quality of life. Further studying their data can help others live better with Parkinson’s.
The study also tracks demographics for underserved Parkinson’s communities, such as Hispanics and Latinos living with the disease.
The study also tracks race, asking participants to self-identify race when enrolling in the Parkinson’s Outcomes Project.
In addition to tracking if participants have a caregiver, the Parkinson’s Outcomes Project also asks caregivers to submit their own data, helping centers and the Foundation track and address caregiver fatigue and other issues unique to care partners.