Objective: Enrollment for The Personalized Parkinson Project (PPP) is underway. Co-design and mutual partnership between patients and researchers is a key characteristic of the project and serves as a leading principle for success.

Background: To date, there are no reliable biomarkers to help predict the widely varying differences between Parkinson’s patients in prognosis, rate of progression, time to development of important milestones (e.g., time to first fall or onset of dementia), or treatment response. Cohorts providing high-quality longitudinal data, with “real world” patients, will help to address this challenge.

Methods: The PPP is a prospective, longitudinal, single-center cohort study comprising subjects diagnosed with Parkinson’s disease within the past 5 years. To enhance the study quality and relevance, a panel of 20 people with Parkinson’s serves to advise the research team. The panel initially advised on the design of the study procedures and recruitment materials and is now engaged to provide input on retention strategies. Study procedures include a clinical assessment (with motor and neuro-psychological tests), biospecimens collection (stool, blood, and optional cerebrospinal fluid), MRI (structural and functional), and ECG (12-lead and Holter). Additionally, near-continuous collection of physiological and environmental data from participants over two years has been enabled through an investigational multi-sensor wearable device (Verily Study Watch). All data are stored with a polymorphic encryption and pseudonymization scheme, assuring the highest level of privacy and allowing for secure data sharing with scientists.

Results: Patient recruitment began in October 2017, and a roster of more than 400 interested subjects quickly accrued. As of March 2018, 42 patients have enrolled in the study (mean age 61 years, 31 men, mean disease duration 53 months). Thus far, 74% have consented to undergoing lumbar puncture. The target is to include 650 patients by December 2019.

Conclusions: The PPP aspires to a deeper understanding of Parkinson’s disease. Involvement of patients in every major aspect of the study design and execution has underscored patients’ eagerness to make a contribution in advancing knowledge. Their partnership in the design and implementation has contributed greatly to its early success.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/update-on-the-personalized-parkinson-project-partnering-with-patients-to-understand-disease-progression-through-a-multi-dimensional-approach/