International Genetic Testing and Counseling Practices for Parkinson's Disease.

Humans Parkinson Disease / diagnosis Genetic Testing Counseling
Parkinson's disease disparities genetic counseling genetic testing genetics

Journal

Movement disorders : official journal of the Movement Disorder Society
ISSN: 1531-8257
Titre abrégé: Mov Disord
Pays: United States
ID NLM: 8610688

Informations de publication

Date de publication:
08 2023
Historique:
revised: 18 04 2023
received: 17 11 2022
accepted: 26 04 2023
pmc-release: 01 08 2024
medline: 28 8 2023
pubmed: 13 6 2023
entrez: 13 6 2023
Statut: ppublish

Résumé

There is growing clinical and research utilization of genetic testing in Parkinson's disease (PD), including direct-to-consumer testing. The aim is to determine the international landscape of genetic testing in PD to inform future worldwide recommendations. 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. 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. 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. © 2023 International Parkinson and Movement Disorder Society.

Sections du résumé

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. © 2023 International Parkinson and Movement Disorder Society.

Identifiants

DOI: 10.1002/mds.29442 PMID: 37310233 PMC: PMC10461455
pubmed: 37310233
doi: 10.1002/mds.29442
pmc: PMC10461455
mid: NIHMS1897358
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1527-1535

Subventions

Organisme : NINDS NIH HHS
ID : P20 NS123220
Pays : United States
Organisme : NINDS NIH HHS
ID : K23 NS097625
Pays : United States
Organisme : NINDS NIH HHS
ID : U01 NS094148
Pays : United States
Organisme : NINDS NIH HHS
ID : U01 NS107016
Pays : United States

Informations de copyright

© 2023 International Parkinson and Movement Disorder Society.

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Auteurs

Rachel Saunders-Pullman (R)

Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
Icahn School of Medicine, Mount Sinai, New York, New York, USA.
ORCID: 0000-0001-8132-8806

Deborah Raymond (D)

Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
Icahn School of Medicine, Mount Sinai, New York, New York, USA.

Roberto A Ortega (RA)

Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
Icahn School of Medicine, Mount Sinai, New York, New York, USA.
ORCID: 0000-0002-8044-3340

Ali Shalash (A)

Department of Neurology, Faculty of Medicine, Ain Shams University, Cairo, Egypt.

Emilia Gatto (E)

Instituto de Neurociencias Buenos Aires, Affiliated University of Buenos Aires, Buenos Aires, Argentina.

Mehri Salari (M)

Functional Neurosurgery Research Center, Shohada-e Tajrish Comprehensive Neurosurgical Center of Excellence, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
ORCID: 0000-0002-1675-681X

Maggie Markgraf (M)

Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
Icahn School of Medicine, Mount Sinai, New York, New York, USA.

Roy N Alcalay (RN)

Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Movement Disorders Division, Neurological Institute, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel.
ORCID: 0000-0002-5717-4875

Deborah Mascalzoni (D)

Institute for Biomedicine, Eurac Research, Affiliated Institute of the University of Lübeck, Bolzano, Italy.
Center for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.

Niccolò E Mencacci (NE)

Ken and Ruth Davee Department of Neurology, Northwestern University, Feinberg School of Medicine, Chicago, Illinois, USA.
ORCID: 0000-0003-3383-9665

Vincenzo Bonifati (V)

Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.

Marcelo Merello (M)

Movement Disorders Section, Neuroscience Department Fleni, Buenos Aires, Argentina.
National Research Council (CONICET), Buenos Aires, Argentina.
Pontifical Catholic University of Argentina, Buenos Aires, Argentina.
ORCID: 0000-0001-6898-7823

Sun Ju Chung (SJ)

Department of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South Korea.
ORCID: 0000-0003-4118-8233

Ivana Novakovic (I)

Faculty of Medicine, Institute of Human Genetics, School of Medicine, University of Belgrade, Belgrade, Serbia.

Soraya Bardien (S)

Division of Molecular Biology and Human Genetics, Department of Biomedical Sciences, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
South African Medical Research Council, Stellenbosch University Genomics of Brain Disorders Research Unit, Cape Town, South Africa.
ORCID: 0000-0002-3508-3438

Gian Pal (G)

Department of Neurology, Rutgers-Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA.
ORCID: 0000-0003-1048-6182

Anne Hall (A)

Research Advocate, Parkinson's Foundation, New York, New York, USA.

Nobutaka Hattori (N)

Department of Neurology, Faculty of Medicine, Juntendo University Tokyo, Japan.
Research Institute of Disease of Old Age, Graduate School of Medicine, Juntendo University, Tokyo, Japan.
Neurodegenerative Disorders Collaborative Laboratory, RIKEN Center for Brain Science, Saitama, Japan.

Timothy Lynch (T)

The Dublin Neurological Institute at the Mater Misericordiae University Hospital, Dublin, Ireland.
Health Affairs & School of Medicine and Medical Science, University College Dublin, Dublin, Ireland.

Avner Thaler (A)

Movement Disorders Unit, Neurological Institute, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel.
Sackler School of Medicine, Tel Aviv University, Tel Aviv, Israel.
Sagol School of Neuroscience, Tel Aviv University, Tel Aviv, Israel.
Laboratory of Early Markers of Neurodegeneration, Neurological Institute, Tel Aviv Medical Center, Tel Aviv, Israel.

Carolyn M Sue (CM)

Department of Neurogenetics, Kolling Institute, Royal North Shore Hospital and University of Sydney, Sydney, Australia.

Tatiana Foroud (T)

Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA.

Jennifer Verbrugge (J)

Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA.

Jeanine Schulze (J)

Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA.

Lola Cook (L)

Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA.
ORCID: 0000-0001-6109-4598

Karen Marder (K)

Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.

Oksana Suchowersky (O)

Departments of Medicine (Neurology), Medical Genetics and Pediatrics, University of Alberta, Edmonton, Alberta, Canada.

Christine Klein (C)

Institute of Neurogenetics, University of Lübeck and University Hospital Schleswig-Holstein, Lübeck, Germany.

Tatyana Simuni (T)

Ken and Ruth Davee Department of Neurology, Northwestern University, Feinberg School of Medicine, Chicago, Illinois, USA.

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