Dr. Anna Naito 00:00:01
From our current data, we've actually found that 14.2 percent of our participants carry a genetic form of Parkinson's.
I'm Dr. Anna Naito, Associate Vice President of Research Programs here at the Parkinson's Foundation. Today I'm going to share some early results from our genetic testing initiative, PD Generation, Mapping the Future of Parkinson's Disease.
PD Generation is a national study that offers genetic testing for Parkinson's-related genes and genetic counseling at no cost for participants with a confirmed Parkinson's diagnosis. The goal of PD Generation is to improve Parkinson's care by accelerating research to advance treatment. The study also helps people with Parkinson's and their clinicians identify whether they may qualify for enrollment into certain clinical trials based on their results. This study uniquely addresses the three mission pillars of the foundation, including care, education, and research.
We're excited to report that we have enrolled over 4,000 people with Parkinson's into the PD Generation study, and that means we've reached 26 percent of our goal to recruit 15,000 participants. PD Generation screens for mutations across seven genes that are linked to Parkinson's, and from our current data, we've actually found that 14.2 percent of our participants carry a genetic form of Parkinson's. The GBA gene is the most common genetic mutation found among our participants.
Carriers of this gene may experience PD symptoms at an earlier age compared to those without a genetic form of Parkinson's. Another key PD Generation finding is that 2 percent of our participants carried more than one genetic mutation.
Dr. Anna Naito 00:01:59
Parkinson's research has long been static, and this is because data have largely been based on European ancestry populations.
No two people with Parkinson's are identical, and that's why diversifying the data is so critical. It's going to help us accelerate our pace of research and better understand the underlying causes of the disease, which might not just be one pathway or one cause.
Through PD Generation, we aim to make genetic testing accessible to every person living with Parkinson's, and we currently have participants enrolled across all 50 states, Puerto Rico, and the Dominican Republic.
The study offers genetic testing and counseling in both English and Spanish, which is a first of its kind for a research study of this scale. We have also collaborated with our PD Gene Latino Advisory Committee, which is helping us increase clinical research education and participation among Hispanic and Latinx people living with Parkinson's.
The goal of this advisory committee is to really learn about the needs of the community and then also learn about their experiences with Parkinson's so that we can come to them and address their needs.
Between 2020 and 2021, the number of Spanish-speaking participants who enrolled in PD Generation increased by 40 percent, which is really exciting. We also recently formed a partnership with Morehouse School of Medicine that aims to make PD Generation more accessible to Black and African American communities.
Dr. Anna Naito 00:03:35
The next phase of our genetics studies is to focus on expanding to new areas as part of our commitment to reach new populations.
We are enrolling people across 23 testing centers and continuing to offer at-home testing through telemedicine. We are currently in the process of expanding to Canada and Israel, as well as several other countries that will help bring a new level of diversity and depth to our data and allow us to serve a broader community of people with Parkinson's.
One of our future goals is to expand the PD Generation study to South America so that we can further diversify our data and connect more people to clinical trials.
We're excited about the potential of PD Generation in helping researchers better understand the role of genetics in Parkinson's disease. To learn more about PD Generation or to enroll in the study, visit parkinson.org/PDGeneration or call our helpline at 1-800-4PD-INFO.
