PPP — Personalized Parkinson Project
Overview
The Personalized Parkinson Project (PPP, “Parkinson Op Maat”) is a longitudinal Parkinson’s cohort built as an openly reusable resource: a deeply phenotyped dataset that researchers worldwide can access to accelerate biomarker discovery and personalised care. Run by the Radboud University Medical Center and the Donders Institute in Nijmegen since 2017, it follows early-stage patients with annual clinical, imaging, biospecimen, and wearable-sensor data, and shares them under a privacy-preserving access model. Its scale and open-reuse design make it a European peer of PPMI.
Data
PPP collects longitudinal clinical and clinimetric assessments, magnetic resonance imaging, molecular and biospecimen data (plasma and other biosamples), and continuous wrist-worn wearable sensor data captured with the Verily Study Watch, the same device used by PPMI. The cohort comprises around 650 representative Parkinson’s patients with disease duration under five years, with additional sub-cohorts (a de novo cohort and a progressive supranuclear palsy cohort) extending the original design.
Governance and access
Data are made available to qualified researchers worldwide on the basis of a data use agreement and informed consent. Data governance is managed by dedicated advisory boards and a Research and Data Sharing Review Committee (RDSRC), which controls access and limits the availability of information that could be used to re-identify participants, as specified in the study protocol. The study was approved by the regional medical research ethics committee (METC Oost-Nederland) and pseudonymises and protects participant data using the PEP (Polymorphic Encryption and Pseudonymisation) framework, satisfying the pseudonymisation requirements of the GDPR.
Connections
- relatedTo: Donders Institute (PPP is run out of the Donders Institute and Radboudumc Neurology)
- relatedTo: PEP (PPP data is pseudonymised and protected using the PEP framework)
- registeredIn: ClinicalTrials.gov (NCT03364894)
Resources
- https://www.parkinsonopmaat.nl
- https://clinicaltrials.gov/study/NCT03364894 (PPP main cohort registration)
- https://doi.org/10.1186/s12883-019-1394-3 (Bloem et al. 2019, PPP study design paper)
- https://doi.org/10.3233/JPD-202431 (van Gastel et al. 2021, polymorphic pseudonymisation in PPP)