Updated: Apr 25
Genetics is a key step in solving Parkinson’s disease (PD). Understanding how and why Parkinson’s and genetics fit together is a mystery the Parkinson’s Foundation is looking to solve through their landmark study, PD GENEration: Mapping the Future of Parkinson’s Disease. The Parkinson’s Foundation is excited to announce that they are accelerating the path to solving the puzzle of genetics and Parkinson’s through reaching a significant study milestone of providing genetic testing and counseling to 7,500 participants – 12 months ahead of the study recruitment timeline.
“Ensuring that the entire Parkinson’s community – including the 90,000 individuals expected to receive a PD diagnosis this year – has access to their genetic status is as critical as ever,” said James Beck, PhD, chief scientific officer for the Parkinson’s Foundation. “Every PD GENEration participant plays a part not only in their own personal discovery but also in feeding results to researchers which will advance future research.”
Half-way to its goal, the study is on track to provide genetic testing and counseling at no cost to 15,000 people with Parkinson’s, which will establish the largest Parkinson’s genomic dataset in North America. Recognizing the importance of genetic testing to accelerate precision medicine trials, the Foundation is committed to continue PD GENERation recruitment (beyond 15,000 participants) until we reach success with clinical therapies.
In 2022, the Parkinson’s Foundation expanded the study and made access to genetic testing possible for people with Parkinson’s in all 50 U.S. states, Puerto Rico, the Dominican Republic and Canada. In the next two years, they will introduce PD GENEration to Israel and other countries, bringing a new level of diversity and depth to Parkinson’s genetic research, which can lead to greater insights.
The study continues to expand its reach with the addition of testing sites and collaborations with clinicians in historically excluded communities. This includes a partnership with Morehouse School of Medicine, aiming to make the study more accessible for Black and African American persons in Atlanta, GA. Similarly, the Foundation extensively engages Hispanics and Latinos and provides genetic counseling in English and Spanish, a first-of-its-kind for a study of this scale. Roughly 22% of PD GENEration participants are of Latino or Hispanic descent, a landmark achievement for any clinical research study of this size.
“Through the expansion of the PD GENEration study to more populations, the Parkinson’s Foundation is bringing diversity to genetics data,” said Carlos Singer, MD, professor of neurology at the University of Miami Miller School of Medicine. “In turn, this will accelerate the pace of research to help all people with Parkinson’s regardless of where they live.”
The study’s data are analyzed in real-time by the Parkinson’s Disease Gene Curation Expert Panel (GCEP), an international working group of genetic experts focused on neurodegenerative diseases formed by the Foundation within the NIH-funded Clinical Genome (ClinGen) Resources.
Currently, investigators have found that approximately 14% of the overall cohort have a genetic form of PD – a significant observation compared to the long-standing estimate of 10%.
PD GENEration empowers participants to understand their genetic results. This knowledge can help them make more informed decisions about care and take advantage of clinical studies that are newly accessible to them. Genetics can not only help us uncover potential causes of Parkinson’s, but results from this study can lead to improved treatments and care for everyone with Parkinson’s.
To enroll and help the Parkinson’s Foundation further with PD genetics research, go to Parkinson.org/PDGENEration.
WEBINAR AVAILABLE: UNDERSTANDING GENE AND CELL-BASED THERAPIES IN PARKINSON’S
While still in the developmental stage, genetic and cell-based therapies hold some promise for people with Parkinson’s disease (PD). This webinar will review what those considering gene-based or cell-based therapy may expect in terms of symptom management and disease progression.
May 10, 2023 - 12 pm Noon
The expert briefing webinars are designed with the Parkinson’s community in mind. Each hour-long webinar explores the latest Parkinson’s research and updates from experts in the field along with the opportunity to ask questions.
Additional Webinars that you can watch on demand, include:
A Balancing Act: Freezing and Fall Prevention in Parkinson’s Colum MacKinnon, PhD, reviews how freezing and other movement and non-movement symptoms can contribute to falls and how to lessen the risk.
Parkinson’s and Medications: What’s New Tanya Simuni, MD, discusses the advances in Parkinson’s treatments for movement and non-movement symptoms and where we are on the path to personalized medicine.
All webinars are recorded and available
Parkinson’s Foundation. Parkinson’s Report. Spring 2023 Awareness Issue. “Global Genetics Study Reaches 50% Enrollment Milestone.”