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

Saunders-Pullman, Rachel (author)
Raymond, Deborah (author)
Ortega, Roberto A (author)
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Shalash, Ali (author)
Gatto, Emilia (author)
Salari, Mehri (author)
Markgraf, Maggie (author)
Alcalay, Roy N (author)
Mascalzoni, Deborah, 1973- (author)
Uppsala universitet,Centrum för forsknings- och bioetik
Mencacci, Niccolò E (author)
Bonifati, Vincenzo (author)
Merello, Marcelo (author)
Chung, Sun Ju (author)
Novakovic, Ivana (author)
Bardien, Soraya (author)
Pal, Gian (author)
Hall, Anne (author)
Hattori, Nobutaka (author)
Lynch, Timothy (author)
Thaler, Avner (author)
Sue, Carolyn M (author)
Foroud, Tatiana (author)
Verbrugge, Jennifer (author)
Schulze, Jeanine (author)
Cook, Lola (author)
Marder, Karen (author)
Suchowersky, Oksana (author)
Klein, Christine (author)
Simuni, Tatyana (author)
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 (creator_code:org_t)
2023
2023
English.
In: Movement Disorders. - 0885-3185 .- 1531-8257. ; 38:8, s. 1527-1535
  • Journal article (peer-reviewed)
Abstract Subject headings
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  • 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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Medicinska och farmaceutiska grundvetenskaper -- Medicinsk genetik (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Basic Medicine -- Medical Genetics (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Medicinsk etik (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Medical Ethics (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Neurologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Neurology (hsv//eng)

Keyword

Parkinson's disease
disparities
genetic counseling
genetic testing
genetics

Publication and Content Type

ref (subject category)
art (subject category)

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