Objective: To create a harmonised resource for Parkinson’s disease (PD) research using observational study data and linkage to UK National Health Service (NHS) electronic healthcare records (EHR). The resource will be called the Parkinson’s Clinical Cohorts Collaborative (PC3).

Background: Observational research into PD has generated substantial breakthroughs in our understanding. From delineating prodromal disease features, to prioritising druggable targets through genetic studies, such work is informing drug development, policy change, and optimising trial cohort selection. The UK has many PD cohorts covering the full spectrum of disease (from prodrome to advanced PD, and atypical parkinsonism cohorts). Over three years, we will develop PC3, which will unlock the potential of a single, harmonised research database, integrating multiple UK PD observational studies and achieving linkage of research data to routinely-collected healthcare records data.

Method: PC3 will integrate data from up to fifteen PD cohorts, aiming to include >10,000 individuals with PD/parkinsonism, ~2,000 prodromal cases (e.g., RBD, GBA1 carriers), and >10,000 controls. Data will be harmonised to equivalent nomenclature across study variables. The harmonised dataset will be enriched through national NHS data linkage (most UK healthcare delivery is through the NHS) to inpatient, outpatient, and mortality records, for 25 years of retrospective data, and 2 years of prospective data. Primary care and prescribing data will also be sought. Linkage will be conducted through explicit participant consent, or where required, through a Confidentiality Advisory Group approval pathway.

Results: The final dataset will be securely stored within a Trusted Research Environment, accessible to the PD research community. This dataset will include demographic, clinical, genetic, and environmental data. Patient and public involvement and engagement is critical from study conceptualisation, through to setting research priorities.

Conclusion: We hope that PC3 will bring unparalleled research value to the PD research community. Included cohorts are socioeconomically and ethnically diverse, each having different recruitment strategies, yielding a uniquely representative cohort. PC3 will serve the global PD community – patients, researchers, clinicians, and industry alike.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-parkinsons-clinical-cohorts-collaborative-pc3-a-novel-research-database-for-parkinsons-disease-research/