Objective: To describe the newly developed Parkinson’s Outcomes Project data sharing policy to the entire research community with a long-term goal of accelerating novel hypothesis generation, access and data analyses to improve clinical outcomes and care for people with Parkinson’s disease (PWP).

Background: The Parkinson’s Outcomes Project, sponsored by the Parkinson’s Foundation, is an international multi-center, prospective, longitudinal study of people with Parkinson’s disease (PWP). The study was launched in 2009 and involves prospective data collection among 29 global Parkinson’s Foundation Centers of Excellence sites.  Heretofore data have been available for use by the participating investigators.

Method: Data collected in the study include demographic information, disease onset, duration, stage and symptom-severity, living situation, comorbid conditions, dopaminergic and other commonly used medications, other treatments/referrals, as well as scores for mobility (timed up-and-go test),  cognition, health-related quality of life (the Parkinson’s Disease Questionnaire-39), hospitalization and emergency room visits and caregiver strain (multi-dimensional caregiver strain Index). Participants are assessed annually in-person. The study leadership team has developed a new data sharing policy and procedure.

Results: An accrual of 13,141 PWP are enrolled in the study and have been followed over a range between 1-11 years. 50 manuscripts resulting from the Parkinson’s Outcomes Project have been published describing care practices and outcomes at expert centers. De-identified clinical data will be made available to the research community upon submission and approval of a written proposal outlining the objectives of data use and analysis methods. Results of all analyses will be shared back to the research community to help inform unmet needs for PWP and their care partners, gaps in clinical care, and quality improvement measures that collectively lead to improved clinical outcomes. Access procedures and data sharing policies will be presented.

Conclusion: There is great opportunity to advance research and interdisciplinary care for PWP through open data sharing of the de-identified Parkinson’s Outcomes Project data.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/open-data-sharing-of-the-parkinsons-outcomes-project-a-global-longitudinal-clinical-study-of-over-13000-people-with-parkinsons-disease/