MIAMI & NEW YORK (September 15, 2022) – The Parkinson’s Foundation will present six scientific posters highlighting research, care and education at the 2022 International Congress of Parkinson’s Disease and Movement Disorders® hosted by the International Parkinson and Movement Disorders Society. Taking place through Sept. 18, the event brings together thousands of movement disorder specialists – including the top neurologists and Parkinson’s disease (PD) researchers – to share ideas that can evolve the field. Selected as a Poster Tour distinction, the Foundation’s PD GENEration genetic registry study will be featured several times, including an invited plenary presentation by Principal Investigator, Roy Alcalay, MD, MS.
“The recognition of PD GENEration at an international forum speaks to the impact that this study has already made in the field and represents our commitment to delivering improvements to Parkinson’s disease care and research,” said Associate Vice President of Clinical Research Anna Naito, PhD, of the Parkinson’s Foundation. “We are confident that PD GENEration’s contributions to the global research community will bring us closer to scientific breakthroughs. Through PD GENEration, we have developed international collaborations with fieldwide experts, allowing us to accelerate the research and treatment field forward globally.”
Parkinson’s Foundation poster presentations will include:
Gene and Variant Curation of Parkinson’s Disease Genes by an Authoritative Expert Panel
With advancements in the Parkinson’s field towards precision medicine, the Foundation has established an expert panel for PD genetics under ClinGen – an FDA-recognized, global resource that uses field-wide criteria to determine gene-disease relationships. The PD Gene Curation Expert Panel (PD GCEP) members convenes 58 experts from several countries representing geneticists, PD clinicians, biochemists, genetic counselors and pharmaceutical companies. The PD GCEP aims to inform the FDA and pharmaceutical companies on the prioritization of key genes linked to the disease.
Closing the Gap: Increasing Access to Genetic Testing and Counseling for Hispanics Through Parkinson’s Disease Research
This poster describes efforts taken through the PD GENEration genetic registry study and the GEN-EP Latino study to reach Hispanic populations in the U.S., Puerto Rico and the Dominican Republic. Preliminary results include a total of 22 Hispanic participants identified as carrying a well-known pathogenic/likely pathogenic PD variant representing 14.5% of all individuals tested. Increasing the diversity of genetic data from various populations will help accelerate the understanding of the causes and many symptoms associated with PD.
PD GENEration Clinical Phase: Genetic Diagnostic Yield and Clinical Characteristics
This study aims to assess the prevalence of genetic forms of PD in North America through PD GENEration. Among the North American cohort of PD GENEration, 14.8% of participants carried a genetic variant linked to PD. Widespread genetic testing in North America will help identify previously unsuspected individuals with major PD gene variants, and, ultimately, qualify more people for enrollment in precision medicine clinical trials for PD.
Implementing Team-Based Outpatient Palliative Care in Parkinson’s Foundation Centers of Excellence (COE): Study Design
Despite mounting evidence on the benefits of integrated palliative care (PC) approaches for persons with neurologic illness and their families, there are few models of how to implement and disseminate this model of care. The core intervention is based on a successful model of team-based PC developed in three U.S.-based Parkinson’s Foundation Centers of Excellence and validated in a multisite, randomized controlled trial. This poster describes the study design and early lessons of an implementation project aiming to make integrated PC a new standard of care across the 33 Centers of Excellence in the U.S.
Patient Advisory Boards: A Model for Patient Engagement in Parkinson’s Disease Comparative Effectiveness Research
To address the lack of comparative effectiveness research (CER) in PD and the need to begin building an infrastructure to address this gap, this pilot project aimed to build a replicable, sustainable model of patient engagement in PD CER at academic research centers through patient advisory boards (PABs). This pilot offers a model for patient engagement in PD academic research centers that can facilitate the involvement of people with PD from the community in different stages of the research process, such as when setting research priorities, protocol design and considerations.
Screening and Treatment of Depression in Parkinson’s Disease within Movement Disorders Centers: A Quality Improvement Initiative
A substantial proportion of people with PD that report depressed mood are not receiving mental health services or treatment. This study aims to assess the feasibility of systematic depression screening using a 15-question survey of people with PD at six Centers of Excellence and determine barriers in the specialist movement disorders setting. Systematic screening for depression will help to improve the standard of care and quality of life by educating both clinicians and people with PD.
To view and learn more about Parkinson’s Foundation research findings being presented at the 2022 MDS International Congress visit Parkinson.org/Blog. Find more about the Foundation’s commitment to research at Parkinson.org/Research.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $400 million in Parkinson’s research and clinical care. Connect with us on Parkinson.org, Facebook, Twitter, Instagram or call (800) 4PD-INFO (473-4636).
About Parkinson’s Disease
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the U.S. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the U.S. alone.