International Genetic Testing and Counseling Practices for Parkinson's Disease

Rachel Saunders-Pullman; Deborah Raymond; Roberto A. Ortega; Ali Shalash; Emilia Gatto; Mehri Salari; Maggie Markgraf; Roy N. Alcalay; Deborah Mascalzoni; Niccolò E. Mencacci; Vincenzo Bonifati; Marcelo Merello; Sun Ju Chung; Ivana Novakovic; Soraya Bardien; Gian Pal; Anne Hall; Nobutaka Hattori; Timothy Lynch; Avner Thaler; Carolyn M. Sue; Tatiana Foroud; Jennifer Verbrugge; Jeanine Schulze; Lola Cook; Karen Marder; Oksana Suchowersky; Christine Klein; Tatyana Simuni

doi:10.1002/mds.29442

International Genetic Testing and Counseling Practices for Parkinson's Disease

Rachel Saunders-Pullman^*, Deborah Raymond, Roberto A. Ortega, Ali Shalash, Emilia Gatto, Mehri Salari, Maggie Markgraf, Roy N. Alcalay, Deborah Mascalzoni, Niccolò E. Mencacci, Vincenzo Bonifati, Marcelo Merello, Sun Ju Chung, Ivana Novakovic, Soraya Bardien, Gian Pal, Anne Hall, Nobutaka Hattori, Timothy Lynch, Avner ThalerCarolyn M. Sue, Tatiana Foroud, Jennifer Verbrugge, Jeanine Schulze, Lola Cook, Karen Marder, Oksana Suchowersky, Christine Klein, Tatyana Simuni

^*Corresponding author for this work

Neurology

Research output: Contribution to journal › Article › peer-review

6 Scopus citations

Abstract

Background: There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct-to-consumer testing. Objectives: The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. Methods: A 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. Results: Common 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. Conclusions: This 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.

Original language	English (US)
Pages (from-to)	1527-1535
Number of pages	9
Journal	Movement Disorders
Volume	38
Issue number	8
DOIs	https://doi.org/10.1002/mds.29442
State	Published - Aug 2023

Funding

R.S.P. is supported by NIH‐NINDS U01 NS107016, the Empire Clinical Research Investigator Program, Bachmann‐Strauss Chair, Bonnie and Tom Strauss Center for Movement Disorders. R.O. is supported by NIH‐NINDS U01 NS107016 and the Bigglesworth Family Foundation. G.P. is supported by the National Institute of Neurological Disorders and Stroke K23‐NS097625‐05. S.B. is supported by the South African Medical Research Council (Self‐Initiated Research Grant) and the National Research Foundation of South Africa (grant number: 129249). N.E.M. is funded by the Parkinson's foundation and ASAP (GP2). C.K. is supported by the DFG (FOR 2488) and by the MJFF and ASAP (GP2). C.M.S. is supported by the NHMRC, MRFF, and the ASAP CRN. Funding agencies: The authors wish to most heartily acknowledge the tremendous work of Sandra Videmsky on the development and execution of the survey. They are also grateful to the The International Parkinson and Movement Disorder Society members who graciously and kindly donated their time and energy for this study.

Keywords

Parkinson's disease
disparities
genetic counseling
genetic testing
genetics

ASJC Scopus subject areas

Neurology
Clinical Neurology

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10.1002/mds.29442

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Saunders-Pullman, R., Raymond, D., Ortega, R. A., Shalash, A., Gatto, E., Salari, M., Markgraf, M., Alcalay, R. N., Mascalzoni, D., Mencacci, N. E., Bonifati, V., Merello, M., Chung, S. J., Novakovic, I., Bardien, S., Pal, G., Hall, A., Hattori, N., Lynch, T., ... Simuni, T. (2023). International Genetic Testing and Counseling Practices for Parkinson's Disease. Movement Disorders, 38(8), 1527-1535. https://doi.org/10.1002/mds.29442

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title = "International Genetic Testing and Counseling Practices for Parkinson's Disease",

abstract = "Background: There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct-to-consumer testing. Objectives: The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. Methods: A 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. Results: Common 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. Conclusions: This 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.",

keywords = "Parkinson's disease, disparities, genetic counseling, genetic testing, genetics",

author = "Rachel Saunders-Pullman and Deborah Raymond and Ortega, {Roberto A.} and Ali Shalash and Emilia Gatto and Mehri Salari and Maggie Markgraf and Alcalay, {Roy N.} and Deborah Mascalzoni and Mencacci, {Niccol{\`o} E.} and Vincenzo Bonifati and Marcelo Merello and Chung, {Sun Ju} and Ivana Novakovic and Soraya Bardien and Gian Pal and Anne Hall and Nobutaka Hattori and Timothy Lynch and Avner Thaler and Sue, {Carolyn M.} and Tatiana Foroud and Jennifer Verbrugge and Jeanine Schulze and Lola Cook and Karen Marder and Oksana Suchowersky and Christine Klein and Tatyana Simuni",

note = "Publisher Copyright: {\textcopyright} 2023 International Parkinson and Movement Disorder Society.",

year = "2023",

month = aug,

doi = "10.1002/mds.29442",

language = "English (US)",

volume = "38",

pages = "1527--1535",

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Saunders-Pullman, R, Raymond, D, Ortega, RA, Shalash, A, Gatto, E, Salari, M, Markgraf, M, Alcalay, RN, Mascalzoni, D, Mencacci, NE, Bonifati, V, Merello, M, Chung, SJ, Novakovic, I, Bardien, S, Pal, G, Hall, A, Hattori, N, Lynch, T, Thaler, A, Sue, CM, Foroud, T, Verbrugge, J, Schulze, J, Cook, L, Marder, K, Suchowersky, O, Klein, C & Simuni, T 2023, 'International Genetic Testing and Counseling Practices for Parkinson's Disease', Movement Disorders, vol. 38, no. 8, pp. 1527-1535. https://doi.org/10.1002/mds.29442

TY - JOUR

T1 - International Genetic Testing and Counseling Practices for Parkinson's Disease

AU - Saunders-Pullman, Rachel

AU - Raymond, Deborah

AU - Ortega, Roberto A.

AU - Shalash, Ali

AU - Gatto, Emilia

AU - Salari, Mehri

AU - Markgraf, Maggie

AU - Alcalay, Roy N.

AU - Mascalzoni, Deborah

AU - Mencacci, Niccolò E.

AU - Bonifati, Vincenzo

AU - Merello, Marcelo

AU - Chung, Sun Ju

AU - Novakovic, Ivana

AU - Bardien, Soraya

AU - Pal, Gian

AU - Hall, Anne

AU - Hattori, Nobutaka

AU - Lynch, Timothy

AU - Thaler, Avner

AU - Sue, Carolyn M.

AU - Foroud, Tatiana

AU - Verbrugge, Jennifer

AU - Schulze, Jeanine

AU - Cook, Lola

AU - Marder, Karen

AU - Suchowersky, Oksana

AU - Klein, Christine

AU - Simuni, Tatyana

PY - 2023/8

Y1 - 2023/8

N2 - Background: There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct-to-consumer testing. Objectives: The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. Methods: A 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. Results: Common 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. Conclusions: This 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.

AB - Background: There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct-to-consumer testing. Objectives: The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. Methods: A 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. Results: Common 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. Conclusions: This 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.

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KW - genetics

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International Genetic Testing and Counseling Practices for Parkinson's Disease

Abstract

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Keywords

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