Objective: To describe and evaluate recruitment strategies implemented in the East London Parkinson’s Disease (ELPD) Project that were designed to enhance engagement and participation among diverse communities in East London.

Background: Parkinson’s disease (PD) research has historically underrepresented individuals from diverse populations [1]. Recruitment in PD research is challenging, particularly in underrepresented populations due to structural and cultural barriers such as language differences, limited awareness, mistrust of research, and practical constraints [2].

Method: ELPD is a case-control observational study designed to characterise the clinical manifestations and determinants of PD in a diverse population. Recruitment was conducted through the Movement Disorder outpatient clinic at The Royal London Hospital and local community organisations, supported by a culturally representative multilingual research team in the clinic, flexible home-based assessments, transport support, and translated study materials. Regular communication, through newsletters and Patient and Public Involvement and Engagement (PPIE) events, collaboration with community and charity stakeholders, and priority setting were also organised. These recruitment and engagement strategies were implemented and evaluated

Results: Between January 2019 and March 2025, 310 patients with PD and 133 healthy controls were recruited, where 50% of patients with PD and 62% of healthy controls identified as South Asian or Black.  Approximately 45-50% of participants were from the lowest UK deprivation quintile. Overall, recruitment was high across different sub-projects within the ELPD project. Home visits, language-adapted materials, transport support, recruiting in-person from the clinic, newsletters, and discussion-based PPIE activities improved accessibility, trust, participation and engagement, particularly among individuals with limited English proficiency or mobility limitations.

Conclusion: Culturally informed recruitment strategies successfully engaged diverse populations in the ELPD project. These findings suggest a practical and replicable model for future PD and other neurodegenerative research studies aimed at improving inclusivity, representativeness, and equity in research participation and engagement.

Recruitment strategy framework for ELPD Project

References: [1] Harris S, Narayanan NS, Tranel D. Does Black vs. White race affect practitioners’ appraisal of Parkinson’s disease? NPJ Parkinsons Dis. 2023;9(1):106. Published 2023 Jul 7. doi:10.1038/s41531-023-00549-2.

[2] Adrissi J, Marre A, Shramuk ME, Zivin E, Williams K, Larson D. Barriers and facilitators to Parkinson’s disease research participation amongst underrepresented groups. BMC Res Notes. 2025;18(1):240. Published 2025 May 29. doi:10.1186/s13104-025-07293-1.

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