Parkinson’s Foundation Expands International Genetic Testing and Counseling Study Through New Grant Funding

The Parkinson’s Foundation was awarded a grant by Aligning Science Across Parkinson’s (ASAP), enabling the foundation to expand its international genetics study called PD GENEration (NCT04994015). PD GENEration was initiated to offer genetic testing and counseling for people with Parkinson disease (PD). The expansion, driven by the Global Parkinson’s Genetic Program (GP2) for PD genotyping, will focus on including historically underrepresented groups in research, aiming to enhance the diversity of genetic data and improve understandings of PD across different populations.

PD GENEration will transition to whole genome sequencing (WGS) to provide researchers with comprehensive genetic data, which will be shared with the Accelerating Medicines Partnership Parkinson’s Disease (AMP PD) portal. In 2023, PD GENEration achieved a 74% recruitment milestone, with 13,600 participants receiving genetic testing and counseling. Participants are enrolled from all 50 US states, Canada, Puerto Rico, and the Dominican Republic. The study will be available in English and Spanish and will extend to Latin and South America to investigate common genetic factors in PD, with the goal of exploring potential new treatments.

According to interim results shared by the Parkinson’s Foundation:

• 12.7% of study participants were found to have a genetic form of PD, which is higher than the estimated 5% to 10%.
• Hispanic and Latino people have been identified as having the highest rate of genetic mutations related to PD (17%) compared with other ethnic groups.

“Genetic research offers one of the most promising pathways toward new therapies for PD,” said Roy Alcalay, MD, MS, lead principal investigator for PD GENEration. "It is critical that our research includes data from a diverse body of participants because no two people with PD are identical. Data is power, and by providing genetic data to study participants, PD GENEration empowers the community to be involved in additional research toward a cure. The collaboration between the Parkinson's Foundation, ASAP, and GP2 will benefit all people who live with the disease."

The study expansion is anticipated to roll out in the spring of 2024.