Genetics in medicine open · 2026
Change in movement disorder specialist attitudes to genetic testing after implementation of PD GENEration.
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Wang Jesse, Ibrahim Vanessa, Agin-Liebes Julian, Nance Martha, Caulfield Margaret E, Naito Anna, Galvelis Kamalini Ghosh, Beck James C, Alcalay Roy N, Wills Anne-Marie
Аннотация
PURPOSE: Despite advances in recent years, genetic testing for Parkinson 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 repeat survey sent out in 2024 examined how attitudes to genetic testing for PD in clinical practice have changed over the past 5 years.
METHODS: Between October 2024-January 2025, 621 movement disorders specialists from the Parkinson's 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.
RESULTS: In total, 119 PSG clinicians from the United States and Canada responded to the questionnaire. When compared with results from 2019, in 2024 both PD GENEration-affiliated and nonaffilated survey respondents reported fewer barriers to genetic testing both at the clinician and patient level.
CONCLUSION: 2024 survey respondents report greater comfort with ordering and returning genetic test results compared with 2019, concurrent with the launch of PD GENEration, ROPAD, and GP2.
METHODS: Between October 2024-January 2025, 621 movement disorders specialists from the Parkinson's 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.
RESULTS: In total, 119 PSG clinicians from the United States and Canada responded to the questionnaire. When compared with results from 2019, in 2024 both PD GENEration-affiliated and nonaffilated survey respondents reported fewer barriers to genetic testing both at the clinician and patient level.
CONCLUSION: 2024 survey respondents report greater comfort with ordering and returning genetic test results compared with 2019, concurrent with the launch of PD GENEration, ROPAD, and GP2.