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Lack of guidelines ...
Lack of guidelines and translational knowledge is hindering the implementation of psychiatric genetic counseling and testing within Europe : A multi-professional survey study
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- Koido, Kati (författare)
- Karolinska Institutet
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- Ingvoldstad Malmgren, Charlotta (författare)
- Uppsala universitet,Centrum för forsknings- och bioetik,Karolinska Univ Hosp, Dept Clin Genet, Stockholm, Sweden.
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- Pojskic, Lejla (författare)
- Univ Sarajevo, Lab Human Genet, Inst Genet Engn & Biotechnol, Sarajevo, Bosnia & Herceg.
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- Almos, Peter Z. (författare)
- Univ Szeged, Dept Psychiat, Szeged, Hungary.
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- Bergen, Sarah E. (författare)
- Karolinska Institutet
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- Borg, Isabella (författare)
- Univ Malta, Fac Med & Surg, Dept Pathol, Msida, Malta.
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- Bozina, Nada (författare)
- Univ Zagreb, Sch Med, Dept Pharmacol, Zagreb, Croatia.
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- Coviello, Domenico A. (författare)
- IRCCS Ist Giannina Gaslini, Lab Human Genet, Genoa, Italy.
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- Degenhardt, Franziska (författare)
- Univ Hosp Essen, Univ Duisburg Essen, Dept Child & Adolescent Psychiat Psychosomat & Ps, Essen, Germany.
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- Ganoci, Lana (författare)
- Univ Hosp Ctr Zagreb, Div Pharmacogenom & Therapy Individualizat, Dept Lab Diagnost, Zagreb, Croatia.
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- Jensen, Uffe B. (författare)
- Aarhus Univ Hosp, Dept Clin Genet, Aarhus, Denmark.
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- Durand-Lennad, Louise (författare)
- Univ Paris Cite, Inst Psychiat & Neurosci Paris, INSERM, U1266, Paris, France.
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- Laurent-Levinson, Claudine (författare)
- Sorbonne Univ, Grp Rech Clin Troubles Psychiat & Dev PSYDEV 15, Fac Med, Paris, France.;Sorbonne Univ, Ctr Ref Malad Rares Express Psychiat, DMY ORYGINE Femmes Meres Enfants, Serv Psychiat Enfant & Adolescent,AP HP, Paris, France.
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- McQuillin, Andrew (författare)
- UCL, Div Psychiat, Mol Psychiat Lab, London, England.
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- Navickas, Alvydas (författare)
- Vilnius Univ, Inst Clin Med, Psychiat Clin, Fac Med, Vilnius, Lithuania.
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- Pace, Nikolai P. (författare)
- Univ Malta, Ctr Mol Med & Biobanking, Msida, Malta.
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- Paneque, Milena (författare)
- Univ Porto, Inst Mol & Cellular Biol, Inst Res & Innovat Hlth, Ctr Predict & Prevent Genet, Porto, Portugal.
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- Rietschel, Marcella (författare)
- Heidelberg Univ, Cent Inst Mental Hlth, Med Fac Mannheim, Dept Genet Epidemiol Psychiat, Heidelberg, Germany.
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- Grigoroiu-Serbanescu, Maria (författare)
- Alexandru Obregia Clin Psychiat Hosp, Biometr Psychiat Genet Res Unit, Bucharest, Romania.
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- Soller, Maria Johansson (författare)
- Karolinska Univ Hosp, Dept Clin Genet, Stockholm, Sweden.;Karolinska Inst, Stockholm, Sweden.
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- Suvisaari, Jaana (författare)
- Finnish Inst Hlth & Welf, Dept Publ Hlth & Welf, Mental Hlth Team, Helsinki, Finland.
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- Utkus, Algirdas (författare)
- Vilnius Univ, Inst Biomed Sci, Dept Human & Med Genet, Fac Med, Vilnius, Lithuania.
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- Van Assche, Evelien (författare)
- Univ Munster, Dept Psychiat, Munster, Germany.
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Vissouze, Lily (författare)
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- Zuckerman, Shachar (författare)
- Inst Med Genet, Shaare Zedek Med Ctr, Jerusalem, Israel.
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- Chaumette, Boris (författare)
- Univ Paris Cite, Inst Psychiat & Neurosci Paris, INSERM U1266, GHU Paris Psychiat & Neurosci, Paris, France.;McGill Univ, Dept Psychiat, Montreal, PQ, Canada.
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- Tammimies, Kristiina (författare)
- Karolinska Inst, Region Stockholm, Dept Womens & Childrens Hlth, Ctr Psychiat Res,Ctr Neurodev Disorders KIND, Stockholm, Sweden.;Karolinska Univ Hosp, Region Stockholm, Astrid Lindgren Childrens Hosp, Stockholm, Sweden.
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(creator_code:org_t)
- Elsevier, 2023
- 2023
- Engelska.
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Ingår i: European Journal of Medical Genetics. - : Elsevier. - 1769-7212 .- 1878-0849. ; 66:8
- Relaterad länk:
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https://doi.org/10.1...
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https://uu.diva-port... (primary) (Raw object)
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https://doi.org/10.1...
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http://kipublication...
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Abstract
Ämnesord
Stäng
- Genetic research has identified a large number of genetic variants, both rare and common, underlying neurodevelopmental disorders (NDD) and major psychiatric disorders. Currently, these findings are being translated into clinical practice. However, there is a lack of knowledge and guidelines for psychiatric genetic testing (PsychGT) and genetic counseling (PsychGC). The European Union-funded COST action EnGagE (CA17130) network was started to investigate the current implementation status of PsychGT and PsychGC across 35 participating European countries. Here, we present the results of a pan-European online survey in which we gathered the opinions, knowledge, and practices of a self-selected sample of professionals involved/interested in the field.We received answers from 181 respondents. The three main occupational categories were genetic counselor (21.0%), clinical geneticist (24.9%), and researcher (25.4%). Of all 181 respondents, 106 provide GC for any psychiatric disorder or NDD, corresponding to 58.6% of the whole group ranging from 43.2% in Central Eastern Europe to 66.1% in Western Europe. Overall, 65.2% of the respondents reported that genetic testing is offered to individuals with NDD, and 26.5% indicated the same for individuals with major psychiatric disorders. Only 22.1% of the respondents indicated that they have guidelines for PsychGT. Pharmacogenetic testing actionable for psychiatric disorders was offered by 15%. Interestingly, when genetic tests are fully covered by national health insurance, more genetic testing is provided for individuals with NDD but not those with major psychiatric disorders.Our qualitative analyses of responses highlight the lack of guidelines and knowledge on utilizing and using genetic tests and education and training as the major obstacles to implementation. Indeed, the existence of psychiatric genetic training courses was confirmed by only 11.6% of respondents. The question on the relevance of up-to-date education and training in psychiatric genetics on everyday related practice was highly relevant.We provide evidence that PsychGC and PsychGT are already in use across European countries, but there is a lack of guidelines and education. Harmonization of practice and development of guidelines for genetic counseling, testing, and training professionals would improve equality and access to quality care for individuals with psychiatric disorders within Europe.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Psykiatri (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Psychiatry (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Medicinska och farmaceutiska grundvetenskaper -- Medicinsk genetik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Basic Medicine -- Medical Genetics (hsv//eng)
Nyckelord
- Psychiatric disorders
- Neurodevelopmental disorders
- Clinical genetic and pharmacogenetic testing
- Genetic counseling
- Healthcare implementation
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- ref (ämneskategori)
- art (ämneskategori)
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- Av författaren/redakt...
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Koido, Kati
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Ingvoldstad Malm ...
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Pojskic, Lejla
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Almos, Peter Z.
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Bergen, Sarah E.
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Borg, Isabella
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visa fler...
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Bozina, Nada
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Coviello, Domeni ...
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Degenhardt, Fran ...
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Ganoci, Lana
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Jensen, Uffe B.
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Durand-Lennad, L ...
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Laurent-Levinson ...
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McQuillin, Andre ...
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Navickas, Alvyda ...
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Pace, Nikolai P.
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Paneque, Milena
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Rietschel, Marce ...
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Grigoroiu-Serban ...
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Soller, Maria Jo ...
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Suvisaari, Jaana
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Utkus, Algirdas
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Van Assche, Evel ...
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Vissouze, Lily
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Zuckerman, Shach ...
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Chaumette, Boris
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Tammimies, Krist ...
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och Psykiatri
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- Av lärosätet
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Uppsala universitet
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Karolinska Institutet