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International Genetic Testing and Counseling Practices for Parkinson's Disease.
Saunders-Pullman, Rachel; Raymond, Deborah; Ortega, Roberto A; Shalash, Ali; Gatto, Emilia; Salari, Mehri; Markgraf, Maggie; Alcalay, Roy N; Mascalzoni, Deborah; Mencacci, Niccolò E; Bonifati, Vincenzo; Merello, Marcelo; Chung, Sun Ju; Novakovic, Ivana; Bardien, Soraya; Pal, Gian; Hall, Anne; Hattori, Nobutaka; Lynch, Timothy; Thaler, Avner; Sue, Carolyn M; Foroud, Tatiana; Verbrugge, Jennifer; Schulze, Jeanine; Cook, Lola; Marder, Karen; Suchowersky, Oksana; Klein, Christine; Simuni, Tatyana.
Afiliación
  • Saunders-Pullman R; Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
  • Raymond D; Icahn School of Medicine, Mount Sinai, New York, New York, USA.
  • Ortega RA; Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
  • Shalash A; Icahn School of Medicine, Mount Sinai, New York, New York, USA.
  • Gatto E; Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
  • Salari M; Icahn School of Medicine, Mount Sinai, New York, New York, USA.
  • Markgraf M; Department of Neurology, Faculty of Medicine, Ain Shams University, Cairo, Egypt.
  • Alcalay RN; Instituto de Neurociencias Buenos Aires, Affiliated University of Buenos Aires, Buenos Aires, Argentina.
  • Mascalzoni D; Functional Neurosurgery Research Center, Shohada-e Tajrish Comprehensive Neurosurgical Center of Excellence, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
  • Mencacci NE; Department of Neurology, Mount Sinai Beth Israel, New York, New York, USA.
  • Bonifati V; Icahn School of Medicine, Mount Sinai, New York, New York, USA.
  • Merello M; Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
  • Chung SJ; Movement Disorders Division, Neurological Institute, Tel Aviv Sourasky Medical Center, Tel Aviv, Israel.
  • Novakovic I; Institute for Biomedicine, Eurac Research, Affiliated Institute of the University of Lübeck, Bolzano, Italy.
  • Bardien S; Center for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
  • Pal G; Ken and Ruth Davee Department of Neurology, Northwestern University, Feinberg School of Medicine, Chicago, Illinois, USA.
  • Hall A; Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
  • Hattori N; Movement Disorders Section, Neuroscience Department Fleni, Buenos Aires, Argentina.
  • Lynch T; National Research Council (CONICET), Buenos Aires, Argentina.
  • Thaler A; Pontifical Catholic University of Argentina, Buenos Aires, Argentina.
  • Sue CM; Department of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South Korea.
  • Foroud T; Faculty of Medicine, Institute of Human Genetics, School of Medicine, University of Belgrade, Belgrade, Serbia.
  • Verbrugge J; Division of Molecular Biology and Human Genetics, Department of Biomedical Sciences, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
  • Schulze J; South African Medical Research Council, Stellenbosch University Genomics of Brain Disorders Research Unit, Cape Town, South Africa.
  • Cook L; Department of Neurology, Rutgers-Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA.
  • Marder K; Research Advocate, Parkinson's Foundation, New York, New York, USA.
  • Suchowersky O; Department of Neurology, Faculty of Medicine, Juntendo University Tokyo, Japan.
  • Klein C; Research Institute of Disease of Old Age, Graduate School of Medicine, Juntendo University, Tokyo, Japan.
  • Simuni T; Neurodegenerative Disorders Collaborative Laboratory, RIKEN Center for Brain Science, Saitama, Japan.
Mov Disord ; 38(8): 1527-1535, 2023 08.
Article en En | MEDLINE | ID: mdl-37310233
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. © 2023 International Parkinson and Movement Disorder Society.
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Texto completo: 1 Base de datos: MEDLINE Asunto principal: Enfermedad de Parkinson Tipo de estudio: Diagnostic_studies / Guideline / Prognostic_studies Límite: Humans Idioma: En Revista: Mov Disord Asunto de la revista: NEUROLOGIA Año: 2023 Tipo del documento: Article País de afiliación: Estados Unidos
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Base de datos: MEDLINE Asunto principal: Enfermedad de Parkinson Tipo de estudio: Diagnostic_studies / Guideline / Prognostic_studies Límite: Humans Idioma: En Revista: Mov Disord Asunto de la revista: NEUROLOGIA Año: 2023 Tipo del documento: Article País de afiliación: Estados Unidos