Dissemin is shutting down on January 1st, 2025

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Wiley, Movement Disorders, 8(38), p. 1527-1535, 2023

DOI: 10.1002/mds.29442

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International Genetic Testing and Counseling Practices for Parkinson's Disease

Distributing this paper is prohibited by the publisher
Distributing this paper is prohibited by the publisher

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Data provided by SHERPA/RoMEO

Abstract

AbstractBackgroundThere is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct‐to‐consumer testing.ObjectivesThe aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations.MethodsA web‐based survey assessing current practices, concerns, and barriers to genetic testing and counseling was administered to the International Parkinson and Movement Disorders Society membership.ResultsCommon hurdles across sites included cost and access to genetic testing, and counseling, as well as education on genetic counseling. Region‐dependent differences in access to and availability of testing and counseling were most notable in Africa. High‐income countries also demonstrated heterogeneity, with European nations more likely to have genetic testing covered through insurance than Pan‐American and Asian countries.ConclusionsThis survey highlights not only diversity of barriers in different regions but also the shared and highly actionable needs for improved education and access to genetic counseling and testing for PD worldwide. © 2023 International Parkinson and Movement Disorder Society.