Objective: To recruit Parkinson’s Disease (PD) cohorts across the world for the global Parkinson’s Genetics Program (GP2, http://gp2.org/), harmonise clinical data across cohorts for joint analysis, and ensure data can be shared and used within the GP2 network while respecting participant privacy and local data protection regulations. Our overall aim is to integrate clinical and genetic data from 150,000 participants worldwide in a collaborative project.

Background: PD has a variety of clinical presentations. It is currently unclear how genetic determinants of disease and risk factors relate to disease phenotypes. The genetic underpinnings of disease course, age of onset and progression remain to be determined, and to tackle this we need to integrate clinical and genetic data on a massive scale. The clinical cohorts integration working group (CIWG) was established to enable interaction with PD cohorts around the world.

Method: We have established a pathway for identifying and evaluating clinical cohorts from different contexts, including brain banks, drug trials and longitudinal observation cohorts. The CIWG invites cohorts and examines study design for GP2. In turn the Compliance working group works to ensure that data collected in cohorts recruited can be shared in compliance with data sharing regulations. For data harmonisation, we have established a set of core clinical data in common data format to capture the raw clinical data and prepare for sharing with collaborating investigators. The incoming data from each cohort is re-coded into standard data. Quality control is performed in collaboration with the cohort investigators to ensure continuity.

Results: We are engaging with >60 cohorts joining in with the GP2 project. Data harmonisation is in progress, creating a unified dataset for analysis, increasing the power to identify genotype-phenotype associations.

Conclusion: The GP2 study is enabling a new level of collaboration for research into the genetics of PD. Our protocols provide guidelines on clinical data collection and consent for future cohorts, and create a blueprint for open-access collaborative consortia pooling PD cohorts. The outcome will be an open access data analysis resource and collaborative study in which cohort investigators can be fully involved, which will lead to new insights into the causes and treatments for PD.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/building-a-global-parkinsons-genetics-program-gp2-clinical-cohorts-integration-working-group/