Parkinson’s Foundation Expands PD GENEration Research Study to Include Genetic Testing and Counseling At-Home and in English and Spanish

MIAMI & NEW YORK (September 29, 2020) — The Parkinson’s Foundation today announced that it has expanded PD GENEration: Mapping the Future of Parkinson’s Disease to include at-home genetic testing and counseling in English and Spanish for people with Parkinson’s disease (PD) at no cost. PD GENEration is the first national Parkinson’s study to offer bilingual genetic testing at-home or in a clinical setting with counseling.

Potential PD GENEration participants can determine eligibility with a brief questionnaire online. After a screening appointment via telephone, they will schedule a virtual testing appointment. Participants will receive their genetic testing kit in the mail, which they will open and use with guidance from a healthcare professional during their virtual testing appointment. They will then discuss their genetics results with a counselor during a follow-up appointment.

“The Parkinson’s Foundation has adapted to help the PD community gain access to this valuable and empowering information from the safety and comfort of their homes during the ongoing COVID-19 pandemic and beyond,” said James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation. “We are looking forward to continuing this research study so that we may one day soon be able to provide precision treatments for the one million Americans living with Parkinson’s disease.”

The study aims to help people with PD and their physicians identify whether they may qualify for enrollment in certain clinical trials based on their test results. Scientists will use the genetic testing results obtained through this study for future research to develop improved treatments and personalized medicine for Parkinson’s. The Parkinson’s Foundation identified that the Hispanic population is underserved within the PD community. Offering PD GENEration testing at home and in Spanish removes barriers, making it easier for the Hispanic community to participate in Parkinson’s research.

“We want the Hispanic community to know that they can be empowered by taking part in the PD GENEration program and that their voices and experiences are incredibly valuable in helping us move the field forward for the entire PD community,” said Ignacio Mata, PhD, Chair of the Parkinson’s Foundation Hispanic Parkinson’s Advisory Council. “Offering the study in Spanish is critical to ensuring that the Hispanic community can easily participate and therefore will be well represented in this important study.”

Genetic testing and counseling through the program will remain available at six in-person testing sites across the country. The Foundation expects to add 10 additional in-person PD GENEration testing sites in 2021. Due to the scale and contributions of the PD GENEration program, the Foundation was selected to chair the first-ever National Institutes of Health Gene Curation Expert Panel for Parkinson’s Disease. PD GENEration leaders will gather with more than 45 of the world’s top Parkinson’s and genetics researchers to help identify new PD genetic mutations found in PD GENEration and other research to work towards precision medicine therapies for people with Parkinson’s. 

PD GENEration is a first-of-its-kind national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with a confirmed diagnosis of Parkinson’s disease. The long-term goal of PD GENEration is to improve Parkinson’s care by accelerating and supporting research to advance improved treatments and personalized medicine.

To learn more about PD GENEration, call 1-800-4PD-INFO (473-4636) or visit Parkinson.org/PDGENEration.