Objective: To evaluate the feasibility of establishing a national Parkinson’s disease (PD) research registry by enrolling ≥2,000 participants within six months.

Background: Delays in identifying eligible participants remain a key barrier to study completion. Digital condition-specific registries can support more efficient recruitment by enabling large-scale engagement with potential participants, reducing reliance on site-based identification. Online registries may accelerate recruitment to studies and widen access to clinical trials, but their value depends on achieving sufficient scale and population reach.

Method: Join Parkinson’s Research (JPR@Research+Me) was co-designed with people living with PD and launched across the UK in July 2025. Promotion occurred through clinical services, PD charities, social media campaigns and the EJS ACT-PD platform trial. We tracked routes of access using bespoke URLs, and analysed geographic distribution, demographic characteristics and clinical features of registrants.

Results: Within six months, 2,076 individuals registered from all UK regions and devolved nations. Participants were predominantly White British (88.9% vs 76% in the UK population). Median age was 67 years (IQR 60–73), younger than the estimated UK PD population (77 years). Most were retired (66.4%), while 25.6% were in paid employment. Educational attainment was high, with 55.6% reporting completion of full-time education at ≥19 years (vs ~25% in the general older UK population). A minority (4.1%) were treatment-naïve. Median disease duration was 3.9 years (IQR 1.9–7.1). The largest proportion of registrations followed EJS ACT-PD promotion (59.5%), followed by the registry website (20.2%) and charities (12.1%).

Conclusion: Establishing a national PD registry at scale within a short timeframe is feasible. However, current registrants are not fully representative with respect to age, ethnicity and educational status. Future work will prioritise targeted outreach and engagement strategies to improve diversity and inclusivity.

This abstract was also presented at the Association for British Neurologists Annual Meeting, May 2026.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/join-parkinsons-research-jprresearchme-a-uk-wide-registry-to-support-clinical-trial-recruitment-in-parkinsons-disease/