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. Researchers have found several genes that are associated with the risk of developing Parkinson's disease. It's estimated that among people with PD, there may be a genetic link among 10 to 15% of them. Therefore, the Parkinson's Foundation is conducting a massive initiative to document the presence of seven of these genes among people with the disease. It is called PD GENEration: Mapping the Future of Parkinson's Disease. Because different ethnic and geographic populations have different frequencies of many genes, including ones linked to Parkinson's, it's not enough to study one group of people. Therefore, PD GENEration is reaching out to various diverse communities, including ones often underrepresented in research studies. The study aims to accumulate broad knowledge of genetic variants and how they affect the risk of developing PD and the course of the disease, and moreover, how this knowledge may lead to better treatments and eventually a cure. For this podcast episode, I spoke with Amasi Kumeh, the director of research partnership at the Parkinson's Foundation, who works on expanding the PD GENEration study to underserved communities. She explained why it's important to recruit people of diverse backgrounds for the study, and how efforts are expanding beyond the borders of the mainland US, including to Puerto Rico and the Dominican Republic, or DR. Why is recruitment of diverse ethnic communities important to the PD GENEration study?
Amasi Kumeh 2:30 Great question. Historically, genetic testing has been something that has been reserved for upper-class educated white males. Through PD GENEration, what we're looking to do is really expand our genetic information through testing a diverse group of participants from different backgrounds for us to be able to find and accelerate finding a cure for Parkinson's disease.
Dan Keller 2:59 Typically, in the United States, diversity is a problem in medical studies, usually less than 2%. How has PD GENEration been doing so far?
Amasi Kumeh 3:11 PD GENEration has been doing a phenomenal job with helping to decrease barriers to access for getting a PD GENEration test. For instance, we have a collaboration in the Dominican Republic and Puerto Rico, where we're offering genetic testing to people who are interested in PD GENEration. In addition to that, one of the barriers that we are able to break down through testing in the DR and Puerto Rico is that we're offering consenting, and the entire process really, in Spanish, which really helps to break the language barrier that oftentimes people in underserved communities are forced to deal with. In addition to that, we recently partnered with Morehouse School of Medicine in Atlanta, Georgia. Morehouse is a historically Black university, and fun fact, Martin Luther King actually attended Morehouse for schooling. So being able to partner with such a historically Black institution to further our reach into the Black and African American community has been extremely fruitful, and we have been able to learn so much from Dr. Chantale Branson, who currently serves as the lead for neurology at the school.
Dan Keller 4:30 Do you have a recruitment goal for ethnically diverse populations in the study?
Amasi Kumeh 4:36 First and foremost, the goal is for us to be able to recruit as many diverse participants as possible. Right now, for the African American community, we're looking to increase our participation number by three times our current participation rate. In the DR, we've done such a phenomenal job with exceeding our expectations. Enrollment into our favorite sector of the study is—
Dan Keller 5:05 Is there a risk if you don't meet your recruitment goals? How does the study suffer?
Amasi Kumeh 5:11 That's a great question. Ideally, we will not run into that issue. The risk is really that it'll just take us a little bit longer to move towards finding a cure for Parkinson's, and we're confident that we will meet our goals, and we will continue to diversify genetic data within the genetic testing space.
Dan Keller 5:34 You mentioned going to Morehouse and a couple of other ways of doing outreach, but what other means of outreach are you using? These podcasts, Parkinson's Foundation ambassadors, radio, TV, other media?
Amasi Kumeh 5:50 This year we had an amazing opportunity to further our reach into the Black and African American community. One thing that we did that was first of its kind and was extremely influential was a NeuroTalk with Chief Scientific Officer James Beck, and our Morehouse School of Medicine PD GENEration lead Chantale Branson. During the NeuroTalk, we had the opportunity to highlight how PD GENEration is working in the Black and African American community to expand our reach for PD GENEration and genetic testing. In addition to that, we were able to talk about the past, present, and future of genetic testing as it relates to the African American community. I'm not sure how familiar you are with the history of clinical trials, but in the past, African Americans have not always had fair access to clinical trials or been treated fairly during clinical and research trials. Therefore, we thought it was extremely important for Dr. Chantale Branson to be able to acknowledge the past and the history and also talk about presently where we are in terms of clinical research and all of the barriers that have been removed out of the way to make sure that genetic testing is safe to participants, and people feel comfortable being able to enroll into the study and feel comfortable working with their clinicians to really understand the results from their test.
Dan Keller 7:23 What pitch are you making to people to want to participate? Just the knowledge gained or any benefit to them or future patients?
Amasi Kumeh 7:31 The importance of participating in PD GENEration is really to allow our participants to have an opportunity to improve the management of their disease in the future, to be able to learn about their family risk for Parkinson's, help scientists understand Parkinson's disease, improve Parkinson's care and research, accelerate enrollment in PD GENEration as well as other Parkinson's-related clinical trials, and finally aid in the development of improved treatments and personalized medicine for the participant and their future generations.
Dan Keller 8:06 In a nutshell, what's the message to people who are not yet participating?
Amasi Kumeh 8:13 The message is that we want to encourage more people within the community to take part in clinical research, specifically PD GENEration, so that they can improve their disease management and learn more about potential implications for their family, and be better connected with relevant PD trials that may impact the future development of improved treatments for themselves and future generations.
Dan Keller 8:40 Have we missed anything important or interesting that you'd like to add?
Amasi Kumeh 8:45 Yes, the Parkinson's Foundation is working alongside Morehouse. We are creating new tools for the Black and PD community, and we're hosting a number of in-person events for the greater Atlanta area and beyond. Morehouse has allowed us to better learn how to reach the Black and African American community and help make life better for everyone with Parkinson's and their family members. We hope to utilize everything we learn through this partnership to make inclusivity and diversity a cornerstone to all of our foundation research initiatives.
Dan Keller 9:21 Is there any outreach to the Asian community, Pacific Islanders, other than whites and the African American, Black community?
Amasi Kumeh 9:30 Our goal is to utilize lessons learned from our outreach in the Hispanic and African American communities and be able to replicate our strategy to expand PD GENEration in a culturally relevant way to other ethnic communities.
Dan Keller 9:58 For more background and information on the PD GENEration study, visit parkinson.org/pdgeneration, or just search "PD gene" on our website at parkinson.org. There you'll find links to a past podcast, as well as to a fact sheet and blog post describing the process of the study, how you can participate, and what participation entails. There's no cost to participants, including for genetic testing, along with genetic counseling. If participating from home, you'll collect a sample for genetic analysis using a cheek swab, simpler even than brushing your teeth. As of June 2023, more than 8,500 genetic tests have been completed, revealing that 12.7% of the participants have a genetic link to PD. That's about one out of every eight people tested so far. More findings are to come with further enrollment in PD GENEration, and especially with outreach to more diverse groups. 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 and 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.
