VOLUME 26, ISSUE 3 • SEPTEMBER 2022 Full issue »

Authors

Connie Marras, MD
The Edmond J Safra Program in Parkinson's disease, University Health Network, University of Toronto, Toronto, Canada

Miriam Rafferty, PT, DPT, PhD
Shirley Ryan Ability Lab, Northwestern University

Thomas Davis, MD
Department of Neurology Vanderbilt University

Adolfo Ramirez-Zamora, MD
Norman Fixel Institute for Neurological Diseases, University of Florida

Nabila Dahodwala, MD, MS
Department of Neurology, University of Pennsylvania

Marilyn Neault, MD
Parkinson’s Outcomes Project Steering Committee member and Research Advocate living with Parkinson’s

James Beck, PhD
Senior Vice President, Chief Scientific Officer Parkinson’s Foundation

Anna Naito, PhD
Associate Vice President, Research Programs Parkinson’s Foundation

Zachary Meyer, MPH
Associate Director, Clinical Research Parkinson’s Foundation

Data Now Available: Annual Parkinson’s Outcomes Project (POP)

Started in 2009, the Parkinson’s Outcomes Project is an international, multi-center, longitudinal clinical study of care and outcomes that collected data from a subset of 21 sites in North America, the Netherlands and Israel that are a part of the Parkinson’s Foundation’s Center of Excellence network. The study was originally launched to collect information about clinical care and treatment practices during a standard of care visit. Participants were eligible for the study if they received medical care for the diagnosis of PD at one of the participating centers, with continued treatment for at least 1 year at that center, to ensure enrollment of ‘established’ patients under care at that particular center. There have been over 13,000 individuals enrolled in the study, and the data are now being made available to researchers wishing to use them to answer research questions related to outcomes and patterns of care in Parkinson’s disease, as well as caregiver burden.

On an approximately yearly basis, the Parkinson’s Outcomes Project has collected basic demographics, disease duration, Hoehn and Yahr stage (HY), brief neuropsychological profile and cognitive assessments, and pharmacologic and non-pharmacologic management. Exercise duration and intensity, allied health therapies, health-related quality of life, and a brief test of functional mobility were collected. Hospital encounters were also recorded. Participants with care-partners who were present at the study visit were invited to participate and complete the Modified Caregiver Strain Index (MCSI).

A summary of the number participants with longitudinal visits:

# of longitudinal visits	3 or more visits	4	5	6	7
# of participants	6016	3990	2534	1738	1145

As of July 2022, the study has closed enrollment and follow-up visits to focus on referral of participants to the Parkinson’s Foundation’s PD GENEration Genetic Registry study. This change will enable the Parkinson’s Foundation to link the longitudinal clinical data with genetic biomarkers. Data will be openly shared from both studies with the research community. The Parkinson’s Outcomes Project data has already been used to examine care practices and outcomes, revealing substantial variation and opportunities for optimization of care for patients with PD.

If you are interested in the Parkinson’s Outcomes Project data, use the request form, or contact Zachary Meyer (zmeyer@parkinson.org) with any questions.

Request POP data »