A scalable model for Parkinson's disease genetic research in underrepresented populations: lessons from Kyrgyzstan

Background Scalable models for Parkinson's disease (PD) genetics in underrepresented populations are needed, as most studies have focused on individuals of European-ancestry, limiting generalisability across ancestral and environmental contexts. Kyrgyzstan has been largely absent from global PD research. Using Kyrgyzstan as a case study, we aimed to develop and evaluate a scalable PD genetics model integrating research and local capacity building. Methods We implemented a stepwise capacity-building framework within a multi-site prospective PD genetics cohort that included participants with PD and controls, with longitudinal follow-up. The framework integrated community engagement, workforce development, specialist clinical services, data governance, clinical phenotyping, biobanking, and genetic data generation. Participants were recruited through a university-affiliated movement disorders clinic and mobile outreach clinics, using a secure electronic data-capture system and Global Parkinson's Genetics Program (GP2)-aligned standards. Feasibility endpoints included recruitment, participation, assessment completeness, and genetic quality-control metrics. Findings Within 20 months, specialist clinical services and a PD registry with biobanking and secure data infrastructure were established, and 1240 participants were enrolled, representing multiple Central Asian ethnicities, including Kyrgyz, Uzbek, Uyghur, Tatar, Kalmyk, and Dungan, and the country's rural-urban distribution. High participation coincided with community engagement and recruitment through mobile clinics and community outreach. Interpretation Embedding capacity building within active research enabled rapid development of neurogenetic and specialist clinical infrastructure in a resource-limited setting. This programme provides a potentially transferable model for equitable inclusion of underrepresented populations in PD genetics and related neurogenetic research in low- and middle-income countries. Funding This project was supported by the Global Parkinson's Genetics Program (GP2; https://gp2.org). GP2 is funded by the Aligning Science Across Parkinson's (ASAP) initiative and implemented by The Michael J. Fox Foundation for Parkinson's Research (MJFF).