Parkinson’s Foundation Genetics to Launch in Nine Latin American Countries
Parkinson’s disease (PD) affects people in different ways, which is a challenge when trying to develop new treatments and therapies. PD GENEration: Mapping the Future of Parkinson’s Disease, the global Parkinson’s Foundation study that provides genetic testing and counseling at no cost for people diagnosed with PD, is helping researchers overcome this challenge by developing a large PD genetic database for analysis.
Diversity of data — having genetic information about PD from people across the world — creates a strong foundation to propel research breakthroughs. However, Hispanic and Latino members of the PD community often face distinct barriers to living well with Parkinson’s and contributing to PD research. With that in mind, the Parkinson’s Foundation partnered with the Latin American Research consortium on the Genetics of Parkinson’s Disease (LARGE-PD) to expand the PD GENEration study to new countries.
This expansion not only strengthens the PD genetics database for researchers to utilize but also furthers the study’s goal of providing genetic counseling and testing to anyone with PD, anywhere in the world.
Setting Up a Successful Expansion
Expanding a study to new countries requires considerable time, effort and planning for everything to run smoothly. To assist with such expansion, PD GENEration works closely with LARGE-PD, a PD genetics study that has been underway in Latin America since 2006.
“We conducted surveys to understand the health systems model, which vary by country and institution, and how best to integrate the two studies to get the most impactful data,” said Rebeca De León, Director of Clinical Research for the Parkinson’s Foundation.
In 2024, five LARGE-PD sites were chosen to begin offering PD GENEration genetic testing and counseling in Colombia, Chile, Mexico, Peru and El Salvador. In collaboration with Indiana University School of Medicine, specialized training programs were designed and implemented at these sites to ensure that genetic results were returned to participants. In just a few months, these sites enrolled 446 new participants and certified 16 clinicians to return genetic testing results.
“Access to genetic testing and counseling has been a significant gap in LATAM,” said Ignacio Mata, PhD, LARGE-PD Coordinator and Professor at the Cleveland Clinic. “PD GENEration is a major step toward precision medicine, providing empowering genetic information to clinicians and patients that is needed to deliver the best possible treatment for each individual.”
Maintaining Momentum
The Parkinson’s Foundation is enthusiastic about continuing this successful collaboration in Latin America, working to provide genetic testing and counseling to more people with Parkinson’s disease. Soon, PD GENEration will on-board new sites in Argentina, Brazil, Honduras and Uruguay — expanding study access to even more countries.
“We have established a strong network of collaboration with research centers and local specialists, greatly facilitating the integration of the study in each country,” said Anny Coral-Zambrano, Senior Manager of Clinical Research for the Parkinson’s Foundation. “Today, the process runs smoothly because of the innovative solutions we've implemented.”
Outreach campaigns in areas around the existing sites are also helping inform local PD communities of the study. “To support recruitment, we have been holding research educational events where we offer the study,” said Rebeca. “Some testing sites even travel to remote areas to provide medical services and offer the study to those who can't get to the centers.”
PD GENEration’s first-ever event in Mexico City drew 200 attendees, with 82 joining the study at the event. The event featured panels on Parkinson’s, cognition, exercise, and research — and attracted more than 20 doctors. A similar inaugural event in Cali, Colombia, welcomed 215 attendees, offering a Zumba class, cognition games and an expert-led panel on genetics.
The Future of PD GENEration in Latin America
With PD GENEration now available throughout Latin America and expanding to more underserved PD communities, more people living with PD can gain valuable insights into their disease through genetic testing and counseling. As the diversity of genetic information in the PD GENEration database increases, so will the PD research field’s understanding of the disease and lead to impactful treatment breakthroughs.
Along the way, leaders in PD GENEration’s expansion into Latin America have also learned valuable lessons about engaging with diverse PD populations that will guide effective and impactful outreach for the study in the future. Collaborations between PD GENEration and groups like LARGE-PD help the community move forward, together, toward a world where people with PD can live better through improved care and research.
