Objective: Objective: To provide an update on the Parkinson’s Outcomes Project, a longitudinal study measuring outcomes among people with Parkinson’s disease (PwP).

Background: Background: Data collected through the Parkinson’s Outcomes Project examines best practices for standard of care across 21 global Parkinson’s Foundation Centers of Excellence (COEs) to improve clinical outcomes. The data generated from this study are used to identify predictive factors and treatment paradigms that result in better quality of life, and longer survival.

Method: Methods: Data are prospectively collected annually among PwP and their care partners treated at the participating sites during a standard-of-care visit without exclusions. Clinical outcomes are measured by the Parkinson’s Disease Questionnaire 39 (PDQ-39), along with medication changes as well as basic motor and cognitive assessments.

Results: Results:  Of the 13,324 individuals in the cohort, 5,468 remain active and 1,778 are deceased. The average age of participants is 65, with an age of onset of 57 and disease duration of 7 years. 95% of the cohort are Caucasian. Among active participants, 72% are aged 51-75, while <2% are younger than 50. The majority of participants (76%) are Hoehn and Yahr (H&Y) stage 1 or 2. To further characterize people with Parkinson’s, the study will begin a new phase focusing on participants from underrepresented categories including: young-onset PD (<50 years old), early and late stage PD (H&Y 1, 4 and 5), minority (non-Caucasian) races and disease duration >10 years.  The study will also aim to provide genetic testing to all participants to enhance our understanding of the determinants of PD phenotype and outcomes.

Conclusion: Conclusions: The cohort characteristics highlight the challenges faced when recruiting and/or retaining racial and ethnic minorities, as well as the extremes of age and disease stage.  The new data collected among underrepresented groups of PwP, along with their genetic status will address crucial gaps in PD research by enriching our understanding of the disease. Longitudinal follow-up across the disease spectrum offers a valuable resource for multiple stakeholders across the PD community. Future strategies of this study will be to link genotype data with clinical phenotype and develop a diverse cohort that is representative of the overall PD community, across disease progression.

« Back to MDS Virtual Congress 2021

MDS Abstracts - https://www.mdsabstracts.org/abstract/a-new-phase-of-the-parkinsons-outcomes-project-registry-study/