Discussing the Need for Genetic Testing and Counseling in Parkinson Disease


With the Parkinson’s Foundation recently being granted Joint Accreditation and announcing a new and free CME course, James Beck, PhD, senior vice president and chief scientific officer of the organization, commented on the pivotal role genetic testing can play.

James Beck, PhD

James Beck, PhD

The Parkinson’s Foundation has an overarching mission of improving care for patients with Parkinson disease (PD), furthering research efforts and working to ensure clinicians are educated and supported in their professional education and training. Having recently been granted Joint Accreditation for Interprofessional Continuing Education as a provider of continuing education, this allows the Foundation to provide training courses to better educate health care professionals about PD.1

The Foundation further announced their latest free course, Genetic Counseling for Parkinson’s Disease, aimed at increasing awareness about the importance of genetic counseling and testing to identify biological pathways that cause the disease. This coincides with another initiative, PD GENEration, which offers genetic testing and counseling at no cost to patients, with the option to have testing done on-site at a participating Center of Excellence or at home via a telemedicine appointment.

To learn more about the ongoing efforts of the Parkinson’s Foundation, we sat down with James Beck, PhD, senior vice president and chief scientific officer of the organization. In conversation with NeurologyLive®, Beck commented on the importance of increasing awareness of PD, provided updates on the PD GENEration program, and shared his thoughts on the state of the field ahead Parkinson’s Disease Awareness Month in April.

NeurologyLive®:Can you provide background on how Joint Accreditation was earned?

James Beck, PhD: The Parkinson's Foundation created a large, first-of-its-kind, nationwide, genetic testing initiative called PD GENEration, where we're offering free genetic testing and counseling to 15,000 people with Parkinson's disease. As part of the work, we realized that this is something that we don't want to be doing alone, we really want to engage our members of the clinical community, to engage people with Parkinson's. And frankly, this is where people with Parkinson's find that the center of their care is with their doctors. What we wanted to do is create a series of courses to help better familiarize clinicians, neurologists, physician assistants, and others, [about] what it means to offer genetic counseling for people with PD--what are some of the unique aspects of Parkinson's disease when it comes to genetics, compared to other diseases? So, we created this about an hour and a half course that offers clinicians an opportunity to go through the basics of Parkinson's disease itself, the genetics associated with it, how to select different genetic test coverage, and then how to interpret the results that come through.

Can you outline the new course, Genetic Counseling for Parkinson’s Disease? What will it specifically cover and focus on?

The Parkinson's Foundation has been deeply involved in trying to ensure that the clinical community knows more about Parkinson's disease than they do. As you would expect, movement disorder neurologists really know a lot about Parkinson's disease, it's a real focus of their work. But other people in the clinical space, whether they be nurses, physical therapists, even dentists, don't have a lot of regular contact with Parkinson's disease. What we realized is that it's beholden upon the foundation to really be able to ensure that [members of] the clinical community—that a person with Parkinson's may encounter—know more about the disease. We started some different courses on our own and partnered with other groups for the accreditation, but we recognized that the need for accreditation at the Foundation level was really there. We have a lot to offer, and it really kind of streamlines the process in order for us to identify needs within the clinical community, develop, training that's appropriate, and then be able to push it out to really benefit clinicians and allied health professionals in the space who can take that knowledge to improve the care of those living with Parkinson's disease.

Who was involved in the development of the new course?

The instructors involved in this course were Dr. Thomas F. Tropea, DO, MPH, at the University of Pennsylvania Hospital, Martha A. Nance, MD, who's at Struthers [Parkinson's Center], another Center of Excellence for the Parkinson's Foundation, and Janine Schulze, MS, CGC, who's the genetic counselor at Indiana University. They put in a tremendous amount of effort to develop the content, and it's really to their credit that we have such an outstanding course to provide to the clinical community.

Where can interested participants find more information?

The Parkinson's Foundation website is the place to go. We have an online platform, which allows clinicians to go and register, take the course for free, and go through the process and very easily digestible modules in order to complete the course and get their CME credit.

Ahead of Parkinson's Disease Awareness Month in April, what are your thoughts on the current state of the field?

Parkinson's Awareness Month, I think, gives us an opportunity to really recognize that Parkinson's disease impacts nearly a million Americans [as] a daily chronic disease that they have to battle. The foundation takes this very seriously and is working, through a number of ways, to fund research in order to combat Parkinson's disease. In addition, we spend our time trying to improve the lives of those living with Parkinson's disease through our Center of Excellence network, to ensure people get excellent care, but also providing almost daily opportunities for people with Parkinson's to combat the disease and to improve their quality of life through a regular at-home program that we have at the foundation.

Can you provide an update on the PD GENEration program? Is there anything the clinical community needs to know about any recent progress?

Progress on the PD GENEration has been going tremendously. Over 3300 individuals have been tested, so we're about 20% of our goal towards reaching 15,000 individuals. We have worked really hard to begin to expand testing to a larger number of clinicians--we find that there's just tremendous interest in the PD community to understand their genetic status, and the PD GENEration study is really the way to do that. We're hopeful that as we work to prepare the ground, so to speak, for helping people learn whether they have a genetic form of Parkinson's disease or not, that our partners in pharma are busily preparing trials to come forth where they will need to ask these individuals who knows they have a genetic form of Parkinson's disease to step forward and to participate in clinical trials. That is really going to be the way with which we're able to change the course of this terrible disease, is by having people with Parkinson's willing to take that altruistic step, in order participate clinical trials to see whether any of these novel therapies that are being developed will actually be efficacious. If they are, then it will be game changing. I anticipate these precision medicine, gene-targeted therapies could have a tremendous impact in the PD space.

Is there anything else you would like to add?

If anybody has any questions, whether they be a person with Parkinson's or a clinician, our helpline [1-800-4PD-INFO] can help direct people to the correct resource, either on our website or elsewhere.

Transcript edited for clarity.

1. Parkinson's Foundation Awarded Joint Accreditation for Interprofessional Continuing Education. News release. Parkinson’s Foundation. February 7, 2022. Accessed March 4, 2022. https://www.prnewswire.com/news-releases/parkinsons-foundation-awarded-joint-accreditation-for-interprofessional-continuing-education-301475902.html

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