Objective: The PD GENEration (PD GENE) study has expanded into Latin America through collaboration with the Latin American Research Consortium on the GEnetics of Parkinson’s Disease (LARGE-PD). A critical component of this initiative is the return of results to participants via genetic counseling sessions. This report outlines the training developed to equip providers with the necessary skills to support this process and strengthen genetic counseling capacity in Latin America.

Background: The PD GENE study, launched in the U.S. in 2019, offered free, CLIA-certified genetic testing and counseling for people with Parkinson’s Disease (PD). Due to the expansion into Latin America, it was key to address disparities in access to genetic counselors, which included physicians lack of training in genetic counseling. The need for education is recognized globally, as evidenced by insights from the Global Parkinson’s Genetics Program (GP2), which highlighted knowledge gaps and underscored the importance of capacity-building initiatives.

Method: The training included pre-recorded modules covering fundamental genetics, interpretation of genetic reports, principles of genetic counseling, PD-specific counseling, and secondary findings. The assessment included a knowledge-based exam and a recorded mock genetic counseling session. The training was supplemented with written materials, including primary literature and support documents.

Results: The study-specific training was available to all LARGE-PD members. A total of 26 providers enrolled, with 16 completing all requirements. As part of the expansion, five pilot sites were established, each staffed with a trained provider. To date, ~700 participants have been recruited, with genetic results available for 478 individuals and 125 genetic counseling sessions successfully conducted.

Conclusion: The PD GENE-LARGE-PD collaboration has implemented standardized genetic counseling training tailored to the study’s needs. By leveraging asynchronous learning, up-to-date materials, assessments, and mock sessions, the study has facilitated the return of genetic results in Latin America. This framework serves as a scalable model for future initiatives aiming to enhance genetic counseling capacity in regions with limited access. Further expansion of this model could contribute to broader efforts in integrating genetic counseling into clinical care for PD and other neurogenetic conditions.

References: Haspel, R. L., Genzen, J. R., Wagner, J., Fong, K., Wilcox, R., Adem, P. V., … & Wilcox, R. L. (2021). Call for improvement in medical school training in genetics: results of a national survey. Genetics in Medicine, 23(6), 1151-1157.
Tan, A. H., Saffie-Awad, P., Schuh, A. F. S., Lim, S. Y., Madoev, H., Ahmad-Annuar, A., … & Klein, C. (2024). Global Perspectives on Returning Genetic Research Results in Parkinson’s Disease. medRxiv, 2024-07.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/building-genetic-counseling-capacity-in-latin-america-the-pd-generation-large-pd-training-framework/