Change in movement disorder specialist attitudes to genetic testing after implementation of PD GENEration
Jesse WangiD, Vanessa IbrahimiD, Julian Agin‐LiebesiD, MARTHA A. NANCEiD, Margaret Caulfield, Anna NaitoiD, Kamalini Ghosh GalvelisiD, James C. BeckiD, Roy N. AlcalayiD, Anne-Marie A. WillsiD
Abstract
PurposeDespite advances in recent years, genetic testing for Parkinsons disease (PD) is still underutilized in clinical practice. A 2019 questionnaire of movement disorder specialists found low rates of genetic testing in PD and barriers such as cost and insurance coverage. Since that time, PD GENEration as well as several international programs have broadly increased access to genetic testing and counseling for people with PD. A new survey sent out in 2024 examined how genetic testing for PD has changed over the past 5 years. MethodsBetween October 2024-January 2025, 621 movement disorders specialists from the Parkinsons Study Group (PSG) were invited by email to complete a questionnaire assessing knowledge, attitudes, and barriers to genetic testing in PD based on the 2019 survey. Results119 total PSG clinicians from the United States and Canada responded to the questionnaire. When compared to results from 2019, 2024 survey respondents reported increased comfort and willingness to order genetic testing, including reduced fears of negative repercussions. PD GENEration-affiliated sites reported significantly higher genetic testing volume and patients with known genetic variants. Conclusions2024 survey respondents report greater comfort with genetic testing in PD compared to 2019, concurrent with the launch of PD GENEration.
02 /Specification & Classification
Click any tag to browse matching papers- Citations
- 1
- FWCI
- 4.32
- Field percentile
- top 10%
- Research Focus
- Approach
Reproducibility ledger
Nobody has reported trying to reproduce this paper yet. Did you replicate an experiment or run the code? Your report saves the next lab a week.
Sign in to file a reproducibility report.
Related papers
- Global Perspectives on Returning Genetic Research Results in Parkinson's Disease
Ai Huey Tan, Paula Saffie Awad, … the Global Parkinson’s Genetics Program (GP2)·Neurology GeneticsPeer-reviewed·Dec 1, 2024
- More Than Results: A Qualitative Study on the Role of Person-Centered Genetic Counseling in Parkinson Disease Research
Jennifer Verbrugge, Katie Fiallos, … Katharine J. Head·medRxiv·Jun 9, 2026
- Genome sequencing in the Parkinson disease clinic
Emily J. Hill, Laurie A. Robak, … Joshua M Shulman·Neurology GeneticsPeer-reviewed·Jun 20, 2022
- The Implementation, Diagnostic Yield and Clinical Outcome of Genetic Testing on an Inpatient Child and Adolescent Psychiatry Service
Aaron D. Besterman, Joshua Sadik, … Julián A. Martínez-Agosto·Autism ResearchPeer-reviewed·Jul 14, 2020
- Genetic variability and potential effects on clinical trial outcomes: perspectives in Parkinson’s disease
Hampton L. Leonard, Cornelis Blauwendraat, … Ziv Gan‐Or·Journal of Medical GeneticsPeer-reviewed·Nov 29, 2019
- Diversity in Parkinson's disease genetics research: current landscape and future directions
Artur Francisco Schumacher Schuh, Andrei Bieger, … Global Parkinson's Genetics Program (GP2)·Movement DisordersPeer-reviewed·Jul 22, 2022