International Genetic Testing and Counseling Practices for Parkinson's Disease-Reference-Cited by-同舟云学术

International Genetic Testing and Counseling Practices for Parkinson's Disease

Published:2023-06-13 Issue:8 Volume:38 Page:1527-1535
ISSN:0885-3185
Container-title:Movement Disorders
language:en
Short-container-title:Movement Disorders

Author:

Saunders‐Pullman Rachel¹²^ORCID,Raymond Deborah¹²,Ortega Roberto A.¹²^ORCID,Shalash Ali³,Gatto Emilia⁴,Salari Mehri⁵^ORCID,Markgraf Maggie¹²,Alcalay Roy N.⁶⁷^ORCID,Mascalzoni Deborah⁸⁹,Mencacci Niccolò E.¹⁰^ORCID,Bonifati Vincenzo¹¹,Merello Marcelo¹²¹³¹⁴^ORCID,Chung Sun Ju¹⁵^ORCID,Novakovic Ivana¹⁶,Bardien Soraya¹⁷¹⁸^ORCID,Pal Gian¹⁹^ORCID,Hall Anne²⁰,Hattori Nobutaka²¹²²²³,Lynch Timothy²⁴²⁵,Thaler Avner²⁶²⁷²⁸²⁹,Sue Carolyn M.³⁰,Foroud Tatiana³¹,Verbrugge Jennifer³¹,Schulze Jeanine³¹,Cook Lola³¹^ORCID,Marder Karen⁶,Suchowersky Oksana³²,Klein Christine³³,Simuni Tatyana¹⁰

Affiliation:

1. Department of Neurology Mount Sinai Beth Israel New York New York USA

2. Icahn School of Medicine, Mount Sinai New York New York USA

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

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

5. Functional Neurosurgery Research Center, Shohada‐e Tajrish Comprehensive Neurosurgical Center of Excellence Shahid Beheshti University of Medical Sciences Tehran Iran

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

7. Movement Disorders Division Neurological Institute, Tel Aviv Sourasky Medical Center Tel Aviv Israel

8. Institute for Biomedicine Eurac Research, Affiliated Institute of the University of Lübeck Bolzano Italy

9. Center for Research Ethics and Bioethics, Department of Public Health and Caring Sciences Uppsala University Uppsala Sweden

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

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

12. Movement Disorders Section, Neuroscience Department Fleni Buenos Aires Argentina

13. National Research Council (CONICET) Buenos Aires Argentina

14. Pontifical Catholic University of Argentina Buenos Aires Argentina

15. Department of Neurology, Asan Medical Center University of Ulsan College of Medicine Seoul South Korea

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

17. Division of Molecular Biology and Human Genetics, Department of Biomedical Sciences Faculty of Medicine and Health Sciences, Stellenbosch University Cape Town South Africa

18. South African Medical Research Council Stellenbosch University Genomics of Brain Disorders Research Unit Cape Town South Africa

19. Department of Neurology Rutgers‐Robert Wood Johnson Medical School New Brunswick New Jersey USA

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

21. Department of Neurology, Faculty of Medicine Juntendo University Tokyo Japan

22. Research Institute of Disease of Old Age, Graduate School of Medicine Juntendo University Tokyo Japan

23. Neurodegenerative Disorders Collaborative Laboratory RIKEN Center for Brain Science Saitama Japan

24. The Dublin Neurological Institute at the Mater Misericordiae University Hospital Dublin Ireland

25. Health Affairs & School of Medicine and Medical Science University College Dublin Dublin Ireland

26. Movement Disorders Unit Neurological Institute, Tel Aviv Sourasky Medical Center Tel Aviv Israel

27. Sackler School of Medicine Tel Aviv University Tel Aviv Israel

28. Sagol School of Neuroscience Tel Aviv University Tel Aviv Israel

29. Laboratory of Early Markers of Neurodegeneration Neurological Institute, Tel Aviv Medical Center Tel Aviv Israel

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

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

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

33. Institute of Neurogenetics University of Lübeck and University Hospital Schleswig‐Holstein Lübeck Germany

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.

Funder

Aligning Science Across Parkinson’s

Deutsche Forschungsgemeinschaft

Michael J. Fox Foundation for Parkinson's Research

New York State Department of Health

National Institutes of Health

Parkinson's Foundation

South African Medical Research Council

Publisher

Wiley

Subject

Neurology (clinical),Neurology