Podcasts

Episode 59: Understanding Biomarkers to Deliver Precise Treatments

While Parkinson’s disease (PD) is a broad category that includes similar symptoms, each person’s disease may have different features, rate of progression, needs and treatments connected to the specific underlying cause of that person’s disease. As we move towards “personalized” or “precision medicine,” which strives to treat each person’s condition according to their unique disease, research in neurology needs the tools to be able to define differences that can allow a truly personalized approach to treatment. Measuring biomarkers, measurable features that are characteristic of a disease, is one of these tools that provides a better understanding of the disease’s underlying biology and causes. They could be imaging such as MRI, chemicals in the blood or brain, brain wave patterns, or even specific signs and symptoms.

Knowing the underlying causes of the disease can help to design and test therapies that could slow down or stop PD. Using biomarkers would be especially helpful for the design of clinical trials for several reasons. It would allow researchers to segment testing of medications by individuals with similar underlying biology in order to understand if it works for all or just some types of Parkinson’s. It would also help us better monitor if and how a drug is working. Neurologist Dr. Alberto Espay of the University of Cincinnati proposes that Parkinson’s research requires a new way of thinking based on biomarkers to know precisely what kind of disease one is dealing with, especially when participating in clinical trials. Drugs that work for one form of PD may not work for another. Dr. Espay compares the precision of treating Parkinson’s today to where the cancer field was 30 years ago.

Released: July 16, 2019

Fact Sheets

PD GENEration: Mapping the Future of Parkinson's Disease

PD GENEration is a flagship initiative that offers free genetic testing and genetic counseling for people with Parkinson’s disease (PD).

Participating and contributing your genetic data, DNA and blood gives you the opportunity to better manage your disease in the future, help scientists in their journey to advance understanding of PD, improve PD care and research, accelerate enrollment in clinical trials and aid in the development of improved Parkinson’s treatments and personalized medicine.

About Genetic Testing

Genetic testing, which involves a simple blood draw, is a type of medical test that identifies changes, or variants, in genes. Some of these changes may increase the chances of developing a particular disease or predict which treatment may be more beneficial

For people with PD, genetic testing can let us know if you carry known gene changes linked to the disease. It’s estimated that 10-15% of people with PD have a genetic form of the disease, so by better understanding how those with genetic forms of PD experience symptoms related to Parkinson’s and respond to treatment, scientists can begin to develop improved treatments and personalized medicine.

About Genetic Counseling

A genetic counselor is a specialist who advises on risk assessments, provides an education about genetics, analyzes test results and can offer emotional support. PD GENEration provides free genetic counseling to help participants better understand their results, providing people with PD with detailed knowledge of their genetic status for important Parkinson’s-related genes, ultimately empowering them to know more about their own disease.

What are the goals of PD GENEration?

This flagship study aims to provide free genetic testing and genetic counselling that will empower people with PD and their care team, improve Parkinson’s care and research and accelerate enrollment in clinical trials. In addition to a blood sample, participants will be asked to provide their family history of PD, current medication dosage and other relevant medical data.

Through PD GENEration we hope to ultimately offer free genetic testing and genetic counseling to 15,000 people with PD in the U.S., beginning with our goal of enrolling 600 participants during the pilot period.

How Does PD GENEration Work?

PD GENEration will provide people with Parkinson’s and their physicians with detailed knowledge of their genetic status for important Parkinson’s-related genes. In addition, participants will be asked to provide their family history of PD, current medication dosage and other relevant medical data.

People with PD can enroll at participating Parkinson’s Foundation Centers of Excellence or Parkinson Study Group Sites. Steps to follow:

  • Schedule an appointment for genetic testing at a participating Center of Excellence or Parkinson Study Group site.
  • Attend your appointment. Provide consent, have a clinical evaluation and a simple blood draw
  • Genetic testing results will be analyzed and samples will be stored.
  • Meet with your healthcare professional in person or a certified genetic counselor by phone 6-8 weeks after the blood draw to receive and discuss your test results.
  • Fill out online surveys that will be sent to you after your clinical visit to share feedback on how genetic testing has impacted your life.

Who can participate in PD GENEration?

PD GENEration is available to people with a confirmed diagnosis of PD, regardless of age, through participating COEs and Parkinson Study Group sites. To find out if your Center or site is participating, visit Parkinson.org/PDGENEration.

Podcasts

Episode 50: Encountering Gender Differences: Women and PD Initiative

Given the differences women may encounter when dealing with their Parkinson’s Disease (PD), the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Women and PD Teams to Advance Learning and Knowledge project (Women and PD TALK, for short) aims to develop new patient-centered recommendations to improve the health of women living with PD.

Over the two-year term of the project, a national network of ten sites is engaging experts in the patient, research, and health care communities to identify women’s needs, prioritize solutions, and create the recommendations. Using these insights, the Parkinson’s Foundation and leadership teams will develop action plans to improve Parkinson’s care for women. In this podcast, Megan Feeney, a Senior Manager in the Community Engagement Department of the Parkinson’s Foundation, and Jessica Shurer, Clinical Social Worker and Center Coordinator of the Parkinson’s Foundation Center of Excellence at the University of North Carolina in Chapel Hill, discuss the reasons for the project, the personnel involved in it, how it will run, and its goals. While the project is just starting, it is already producing actionable insights.

Released: March 12, 2019

Podcasts

Episode 2: The Parkinson's Foundation’s Role in Improving Standards of Care

Dr. Peter Schmidt of the Parkinson’s Foundation explains where people with Parkinson’s can go to receive the best interdisciplinary care and how the Foundation is improving standards of Parkinson’s care around the world. The Foundation's Centers of Excellence network and the Parkinson's Outcomes Project are key aspects of the discussion.

Podcasts

Episode 45: Patient Engagement in Research: The Parkinson’s Advocates in Research Program (PAIR)

Medical research is a long and complicated process. Discovering the underlying causes of Parkinson’s Disease (PD), finding new treatments, or searching for a cure involves laboratory work, animal testing, and clinical trials with control subjects and then people with Parkinson’s. One important way to facilitate that research is to involve people affected by PD. The Parkinson’s Advocates in Research program (PAIR) at the Parkinson’s Foundation trains people with PD and caregivers to become involved in the research process, advising researchers on the important topics and helping design successful clinical trials without being overly burdensome to people participating in the trials. In this podcast, Karlin Schroeder, Director of Community Engagement at the Parkinson’s Foundation, and Kevin Kwok, a Research Advocate in the PAIR program, describe the program, its aims, and how to get involved for anyone wishing to become an advocate.

Released: January 1, 2019

Podcasts

Episodio 17: ¿Qué es la consejería genética?

Comprender todos los aspectos de una prueba genética – desde los positivos hasta los negativos – es un factor importante del trabajo de la consejería genética para que uno entienda y tenga una idea más clara de por qué se presentó/apareció o se manifestó una enfermedad en la familia.

En este episodio, hablamos con Priscila Delgado Hodges, asesora genética certificada y licenciada en el Departamento de Genética Médica y Molecular (MMGE) de la Facultad de Medicina de la Indiana University, acerca de la consejería genética.

Priscila explica qué es la consejería genética, qué puede esperar un paciente durante una visita y ofrece recomendaciones para personas interesadas en participar en estudios de investigación.

Lanzado: 1 de marzo de 2022

Podcasts

Episode 35: Preclinical Models of PD

Before therapies make it into clinical trials, they undergo a series of laboratory testing. These preclinical models of the disease may include animals, cell lines, or single cell organisms to help validate the success of a potential treatment. Additionally, preclinical models of Parkinson’s disease may help us to understand the mechanisms and the molecular or genetic pathways that control or interfere with normal and abnormal functions. Understanding the underlying disease processes is critical to targeting molecular and cellular pathways for the development of therapies. Richard Smeyne is a professor of neuroscience and director of the Jefferson Comprehensive Movement Disorder and Parkinson’s Center at Thomas Jefferson University in Philadelphia. His laboratory focuses on mechanisms of neurodegeneration and neuroprotection. In this podcast, he discusses the value of research on preclinical models of PD.

Released: August 14, 2018

Podcasts

Episode 34: New Pathways & Drug Development

Developing medical treatments today for the most part depends on identifying a problem, whether it is physical, metabolic, behavioral or psychological and then targeting a treatment for that problem. Knowing what process causes a disease or symptom helps direct discovery of its potential treatments. In the case of Parkinson’s disease, modern techniques such as brain imaging, biochemical tests, and laboratory studies can reveal likely targets for designing new treatments. In this podcast, Michael Okun, National Medical Advisor of the Parkinson’s Foundation and Co-director of the University of Florida Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, discusses Parkinson’s disease mechanisms as possible targets for drug development, where certain drugs stand now, and how the process of bringing a drug to market for PD may be sped up.

Released: July 31, 2018

Podcasts

Episode 15: Why and How to Participate in Parkinson’s Research

Clinical trials – research studies that involve people – are key to medical advances. But sometimes it is hard to recruit and enroll enough participants to make the results meaningful. It is important for people with Parkinson’s disease to participate in clinical trials to help researchers find better ways to treat, and hopefully slow down or even stop, Parkinson’s. Some trials are short, lasting only a few weeks, while some can take years, but all trials aim to produce results that will lead to better lives. Christine Hunter, a nurse and Parkinson’s Foundation Center of Excellence coordinator at Baylor College of Medicine in Houston, describes the value of volunteering for clinical trials and how participants view their experiences.

Released: November 7, 2017

Podcasts

Episode 33: The Parkinson’s Prevalence Project

The prevalence of Parkinson’s disease and parkinsonism has been on the rise since the 1970’s, but a true estimate of how many people are affected had been difficult to ascertain because of how we collected the early data. It is important to know the prevalence of the disease in order to allocate health care resources, including health care professional training as well as money for research into the conditions of PD. The Parkinson’s Foundation has taken a leading role in determining the prevalence of PD and related conditions in the North American population through the Parkinson’s Prevalence Project.

James Beck, vice president for scientific affairs and chief scientific officer of the Parkinson’s Foundation, says he believes the number of people living with Parkinson’s in the United States has been dramatically underestimated and does not represent the ethnic diversity of people affected due to the way in which we gathered older data. He explains how the Parkinson’s Prevalence Project is designed to give a clearer picture of PD in North America.

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