Dan Keller 0:02
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
It's estimated that 10 to 15% of people with Parkinson's have an underlying genetic link to the disease. To better define the link between certain genes and the risk of developing the disease, the Parkinson's Foundation is conducting a nationwide initiative to provide free genetic testing and counseling to people with Parkinson's. The study is called PD Generation: Mapping the Future of Parkinson's Disease. Not only will it add to knowledge about the biological basis of the disease, but participants in the study, their family members, and care team will receive detailed information about their genetic status for Parkinson's-related genes.
Up to now, PD Generation has focused on people within the US who have PD, but different ethnic groups may have different genetic backgrounds, and so the study is expanding to Hispanic communities in Puerto Rico and the Dominican Republic to get a better idea of their underlying genetics and how it may affect the development and the course of their disease.
Today's guest is Rebecca De Leon, Associate Director of the Clinical Research Department at the Parkinson's Foundation. She explains the importance of including people of diverse backgrounds in the study, how the foundation is reaching out to enroll people from Hispanic communities in Puerto Rico and the Dominican Republic, challenges in doing so, and how participation in the study will help accelerate the understanding of the disease. Why don't you tell me briefly about PD Generation's expansion into the Hispanic community?
Rebecca De Leon 2:34
The expansion came from the need to fill the gap in existing PD data. I will be talking a lot about PD, referring to Parkinson's disease. We find there is not a robust representation of individuals of diverse backgrounds; the more diverse the data is, the more we can understand the disease and how it affects those with different backgrounds and different ethnicities.
We know that PD is a very complex disease. One person with PD is one person with PD. Think how different and diverse it can be between different cultures, backgrounds, and individuals. At the Parkinson's Foundation, we believe that the more we connect with the community and hear their experiences, the more we can grow and provide more information. Because of that, we put together the PDG Latino Advisory Committee, a group of professional patients and caregivers that help us understand the needs of the community and how to message information to them.
Together, we have developed and provided resources and materials tailored specifically for the Hispanic community in Spanish. We do not just translate; we develop from scratch to help them understand that they are not alone and that there are options and information for them to look for to have a better life. Thanks to these collaborative efforts, as of today, we have been able to recruit more than a thousand Hispanic Latinos from the United States, Puerto Rico, and the Dominican Republic—a huge accomplishment for this one-of-a-kind initiative.
In the Dominican Republic, in the initial phase, we aimed to recruit 300 participants, and we achieved that and a little bit more, despite the pandemic, short staffing, and logistic challenges that we faced.
Dan Keller 4:50
Has the Hispanic community been underexposed to information on PD up to this time? Do they have a different understanding, or less understanding, than the Anglo community? It seems the study has two benefits: one is outreach to under-reached or underserved communities, plus collecting more diverse data.
Rebecca De Leon 5:12
Correct. In the Hispanic community, another challenge that we identified is the stigma around Parkinson's and the myths around research overall. We identified those, and we are targeting those specific topics with educational materials and resources. We have meetings with them and try to find how we can target those topics so they have a better understanding of what PD is—that it doesn't have to be a stigma. We can all be different and have PD, and we can look for better living.
The stigma and myths around research are something that we see more in this community, and we're targeting that as well, going from zero to ten, trying to see how best for them to understand and how they can feel comfortable talking about having the disease and participating in research projects like this one. PD Generation is a genetic study.
Dan Keller 6:36
Are they very receptive, or have you encountered any challenges? And if so, what are you doing to overcome them?
Rebecca De Leon 6:43
The Hispanic community is all about trust. When they see you and have an encounter where they feel comfortable, and if their PIs tell them to participate in a study like this because it's going to be beneficial to them, they're receptive. They are very family-oriented. If they see you and they trust you, they will go wherever you ask regarding their participation.
We have faced some challenges, but I would say the biggest challenge is getting them to speak to the appropriate healthcare professional so they know it's okay to ask questions and not be afraid to go to the right center. Another is communication. When we are together, talking and knowing about each other, there is an immediate connection. But when we lose that over the phone or email, there isn't as much of a connection.
The challenges with communication involve whether they use the technology or have access to it. I would also like to highlight the importance of the family. Most Hispanic households are multigenerational. We see that a grandson, a sister, or a person who is there to help is great because they assist with technology and help them stay informed about PD. They help them look for information and stay supportive of their family members.
Dan Keller 8:54
We had a past podcast with Dr. Numbobi doing outreach to the Black community in New York City. She was going to farmers' markets and found that was a very receptive place—relaxed and not a medical environment. Where or how are you doing your outreach?
Rebecca De Leon 9:12
As part of the PDG Latino Advisory Committee, we've been doing in-person events where we talk not just about PD 101, because most of our participants are already familiar with that, but we discuss other topics like mental health and genetic research. We have seen a very receptive group, and it's growing. At the first event, we did not have much of an audience, but it started to grow, and every time we announce a program, more people show up in person. They show their interest; we receive emails asking when the next event will be.
We combine these events with local professionals as we go through the country. We collaborate with local professionals so participants know where to go if they need more information. We are moving virtual events back to in-person, but we share all the details on how to find out. We even share helpline information. The Parkinson's Foundation helpline can help them find local professional support groups and events near them. That's how we've been reaching out to the Hispanic community.
Dan Keller 10:53
Is this happening mostly in Puerto Rico and the Dominican Republic, or are you going beyond there?
Rebecca De Leon 11:00
We are working with the Hispanic community in the United States, Dominican Republic, and Puerto Rico, and now we're expanding to Canada. Our wish is to go further; we would like to go to Mexico and Latin America, and it's something that we are aiming for.
Dan Keller 11:23
It's fine to do outreach and get people enrolled in the study, but what is their access to care in some of these places, especially specialty care and neurology? Once they identify they have a problem, do they have access as much as you may have in the States?
Rebecca De Leon 11:44
They do not have the same access. The whole system is very different, even in Puerto Rico, which is a Commonwealth of the United States. But something we are doing is connecting the dots—connecting the community with professionals. As part of PD Generation, those who are recruiting centers try to connect patients with professionals. Even professionals send me notes saying they would like to refer someone to a geriatric psychologist, and we look into our database to connect those professionals. When patients call us or ask questions during a visit about symptoms, we try our best to direct them to the right people to treat them best.
Dan Keller 12:53
What's been your success so far? Where does the outreach stand in terms of getting Hispanic individuals to enroll in the study?
Rebecca De Leon 13:01
As I mentioned, we have more than 1,000 Hispanic Latinos enrolled in the study. I would say that is the largest number in a study like this one, and we are aiming for more. Every day there are more opportunities; people feel more empowered to look for information and are more knowledgeable about what the study entails.
We have found that Hispanics care a lot about their families and want to provide answers to them, especially to know if the disease will be passed down. We return results with a genetic consultation where they understand what the result means—whether they have the variant or not—so they can have that conversation with their family. That has been of great interest to the community.
Dan Keller 14:25
Do you have an enrollment goal, or is it "the more the better"?
Rebecca De Leon 14:29
Good question. The more the better. Our aim is to have the most diverse data possible, specifically from non-represented groups. We are looking for robust data that can help answer questions that are not just pertinent to a certain background. The more diverse and rich the data is, the more we can provide to those with PD and get closer to unlocking the mysteries of the disease.
Dan Keller 15:09
Not all Latinos are homogeneous; they have backgrounds from many different places. Is there demographic information on their backgrounds in the study, whether they're more European, Afro-Caribbean, or things like that?
Rebecca De Leon 15:26
Yes. Especially in the Caribbean, we are a mix of different backgrounds. In the study, we collect information on race and ethnicity, and we always have an "other" option in case they do not identify with the popular options.
Dan Keller 15:50
Have we missed anything interesting or important to add?
Rebecca De Leon 15:54
I would say the challenges with working internationally are significant. The health systems and logistics are very different, but we've been able to overcome them.
Dan Keller 16:09
Are you doing that by collaborating with local people?
Rebecca De Leon 16:14
Yes, with the PIs and their teams. The biggest challenge was logistics with the Dominican Republic, ensuring samples arrived at the laboratory on time. It was a big concern, as was creating educational materials for the community. But thanks to our PI and engagement in the Dominican Republic, we were able to overcome that and meet our recruitment goal.
We are creating our first database for PD with outcomes in that country, and we will make what we collected in the first phase available this year. This is good information not just for the scientific community, but it's beneficial for the local community to find resources for a better life.
Dan Keller 17:26
Finally, in terms of information, doing this PD Gene study stateside, there's genetic counseling provided at no cost. Have you been able to do the same thing in other countries and in Puerto Rico?
Rebecca De Leon 17:41
Yes, that is part of the study, and that is a major perk. During the genetic consultation, participants receive their results and meet with a counselor to understand the meaning. They go into detail about what it means for them and the course of their PD, which empowers them to have better conversations with their healthcare teams.
A lot of our participants are seeking information for their loved ones, and that is the best part of the study. Participating in research may not help a participant immediately, but it can open a bigger door for tomorrow. They are helping others in the future. Understanding the result is the key part and the perk of the study.
Dan Keller 19:02
Very good. Good luck with recruiting more people. It's a valuable study, and you should be able to collect a lot of data. I appreciate your time talking with us.
If you'd like to find out more about the PD Generation study and possibly participate, visit parkinson.org/pdgeneration or call our helpline at 1-800-4PD-INFO. You may also visit parkinson.org/library and search for PD Generation to find past podcasts and fact sheets describing the study and who is eligible. There is no cost to participate; genetic testing is free, and genetic counseling will be provided to explain results and implications for you and your family. Plus, you'll be helping scientists to better understand the biology of Parkinson's disease.
More than 10 million people worldwide live with Parkinson's. During Hispanic Heritage Month and beyond, the Parkinson's Foundation provides free educational resources to the Spanish-speaking PD community. Explore our newly launched articles in Spanish covering medications, symptoms, and tips for daily living at parkinson.org/espanol.
If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, rate, and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
