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Investigation on Sudden Unexpected Death in the Young (SUDY) in Europe: results of the European Heart Rhythm Association Survey

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Behr, E. R., Scrocco, C., Wilde, A. A. M., Marijon, E., Crotti, L., Iliodromitis, K. E., Remme, C. A., Kosiuk, J., Rudaka, I., Brugada, G. S., Frampton, K., Schulze-Bahr, E., Jubele, K., de Asmundis, C., Hofman, N., Tfelt-Hansen, J., Boveda, S., & Conte, G. (2022). Investigation on Sudden Unexpected Death in the Young (SUDY) in Europe: results of the European Heart Rhythm Association Survey. Europace : European pacing, arrhythmias, and cardiac electrophysiology : journal of the working groups on cardiac pacing, arrhythmias, and cardiac cellular electrophysiology of the European Society of Cardiology, 24(2), 331-339. https://doi.org/10.1093/europace/euab176

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Author

Behr, Elijah R ; Scrocco, Chiara ; Wilde, Arthur A M ; Marijon, Eloi ; Crotti, Lia ; Iliodromitis, Konstantinos E ; Remme, Carol A ; Kosiuk, Jedrzej ; Rudaka, Irina ; Brugada, Georgia Sarquella ; Frampton, Katie ; Schulze-Bahr, Eric ; Jubele, Kristine ; de Asmundis, Carlo ; Hofman, Nynke ; Tfelt-Hansen, Jacob ; Boveda, Serge ; Conte, Giulio. / Investigation on Sudden Unexpected Death in the Young (SUDY) in Europe : results of the European Heart Rhythm Association Survey. In: Europace : European pacing, arrhythmias, and cardiac electrophysiology : journal of the working groups on cardiac pacing, arrhythmias, and cardiac cellular electrophysiology of the European Society of Cardiology. 2022 ; Vol. 24, No. 2. pp. 331-339.

Bibtex

@article{37dc794b5f1d4c25972581fb2bcee041,
title = "Investigation on Sudden Unexpected Death in the Young (SUDY) in Europe: results of the European Heart Rhythm Association Survey",
abstract = "The aims of this centre-based survey, promoted and disseminated by the European Heart Rhythm Association (EHRA) was to investigate the current practice for the investigation of Sudden Unexplained Death in the Young (SUDY) amongst European countries. An online questionnaire composed of 21 questions was submitted to the EHRA Research Network, European Cardiac Arrhythmia Genetics (ECGen) Focus Group members, and European Reference Network GUARD-Heart healthcare partners. There were 81 respondents from 24 European countries. The majority (78%) worked in a dedicated clinic focusing on families with inherited cardiac conditions and/or SUDY or had easy access to a nearby one. On average, an autopsy was performed in 43% of SUDY cases. Macroscopic examination of the body and all organs were completed in 71% of cases undergoing autopsy, and expert cardiac examination in 32%. Post-mortem genetic testing was requested on average in 37% of Sudden Arrhythmic Death Syndrome (SADS) cases, but not at all by 20% of survey respondents. Psychological support and bereavement counselling for SADS/SUDY families were available for ≤50% of participants. Whilst electrocardiogram (ECG) and echocardiography were largely employed to investigate SADS relatives, there was an inconsistent approach to the use of provocative testing with exercise ECG, sodium channel blocking drugs, and/or epinephrine and genetic testing. The survey highlighted a significant heterogeneity of service provision and variable adherence to current recommendations for the investigation of SUDY, partly attributable to the availability of dedicated units and specialist tests, genetic evaluation, and post-mortem examination.",
keywords = "Autopsy, European Heart Rhythm Association survey, Genetic testing, Inherited cardiac conditions, Provocation testing, Sudden Arrhythmic Death Syndrome, Sudden death, Sudden Unexplained Death in the Young",
author = "Behr, {Elijah R} and Chiara Scrocco and Wilde, {Arthur A M} and Eloi Marijon and Lia Crotti and Iliodromitis, {Konstantinos E} and Remme, {Carol A} and Jedrzej Kosiuk and Irina Rudaka and Brugada, {Georgia Sarquella} and Katie Frampton and Eric Schulze-Bahr and Kristine Jubele and {de Asmundis}, Carlo and Nynke Hofman and Jacob Tfelt-Hansen and Serge Boveda and Giulio Conte",
note = "Published on behalf of the European Society of Cardiology. All rights reserved. {\textcopyright} The Author(s) 2021. For permissions, please email: journals.permissions@oup.com.",
year = "2022",
month = feb,
day = "2",
doi = "10.1093/europace/euab176",
language = "English",
volume = "24",
pages = "331--339",
journal = "Europace",
issn = "1099-5129",
publisher = "Oxford University Press",
number = "2",

}

RIS

TY - JOUR

T1 - Investigation on Sudden Unexpected Death in the Young (SUDY) in Europe

T2 - results of the European Heart Rhythm Association Survey

AU - Behr, Elijah R

AU - Scrocco, Chiara

AU - Wilde, Arthur A M

AU - Marijon, Eloi

AU - Crotti, Lia

AU - Iliodromitis, Konstantinos E

AU - Remme, Carol A

AU - Kosiuk, Jedrzej

AU - Rudaka, Irina

AU - Brugada, Georgia Sarquella

AU - Frampton, Katie

AU - Schulze-Bahr, Eric

AU - Jubele, Kristine

AU - de Asmundis, Carlo

AU - Hofman, Nynke

AU - Tfelt-Hansen, Jacob

AU - Boveda, Serge

AU - Conte, Giulio

N1 - Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2021. For permissions, please email: journals.permissions@oup.com.

PY - 2022/2/2

Y1 - 2022/2/2

N2 - The aims of this centre-based survey, promoted and disseminated by the European Heart Rhythm Association (EHRA) was to investigate the current practice for the investigation of Sudden Unexplained Death in the Young (SUDY) amongst European countries. An online questionnaire composed of 21 questions was submitted to the EHRA Research Network, European Cardiac Arrhythmia Genetics (ECGen) Focus Group members, and European Reference Network GUARD-Heart healthcare partners. There were 81 respondents from 24 European countries. The majority (78%) worked in a dedicated clinic focusing on families with inherited cardiac conditions and/or SUDY or had easy access to a nearby one. On average, an autopsy was performed in 43% of SUDY cases. Macroscopic examination of the body and all organs were completed in 71% of cases undergoing autopsy, and expert cardiac examination in 32%. Post-mortem genetic testing was requested on average in 37% of Sudden Arrhythmic Death Syndrome (SADS) cases, but not at all by 20% of survey respondents. Psychological support and bereavement counselling for SADS/SUDY families were available for ≤50% of participants. Whilst electrocardiogram (ECG) and echocardiography were largely employed to investigate SADS relatives, there was an inconsistent approach to the use of provocative testing with exercise ECG, sodium channel blocking drugs, and/or epinephrine and genetic testing. The survey highlighted a significant heterogeneity of service provision and variable adherence to current recommendations for the investigation of SUDY, partly attributable to the availability of dedicated units and specialist tests, genetic evaluation, and post-mortem examination.

AB - The aims of this centre-based survey, promoted and disseminated by the European Heart Rhythm Association (EHRA) was to investigate the current practice for the investigation of Sudden Unexplained Death in the Young (SUDY) amongst European countries. An online questionnaire composed of 21 questions was submitted to the EHRA Research Network, European Cardiac Arrhythmia Genetics (ECGen) Focus Group members, and European Reference Network GUARD-Heart healthcare partners. There were 81 respondents from 24 European countries. The majority (78%) worked in a dedicated clinic focusing on families with inherited cardiac conditions and/or SUDY or had easy access to a nearby one. On average, an autopsy was performed in 43% of SUDY cases. Macroscopic examination of the body and all organs were completed in 71% of cases undergoing autopsy, and expert cardiac examination in 32%. Post-mortem genetic testing was requested on average in 37% of Sudden Arrhythmic Death Syndrome (SADS) cases, but not at all by 20% of survey respondents. Psychological support and bereavement counselling for SADS/SUDY families were available for ≤50% of participants. Whilst electrocardiogram (ECG) and echocardiography were largely employed to investigate SADS relatives, there was an inconsistent approach to the use of provocative testing with exercise ECG, sodium channel blocking drugs, and/or epinephrine and genetic testing. The survey highlighted a significant heterogeneity of service provision and variable adherence to current recommendations for the investigation of SUDY, partly attributable to the availability of dedicated units and specialist tests, genetic evaluation, and post-mortem examination.

KW - Autopsy

KW - European Heart Rhythm Association survey

KW - Genetic testing

KW - Inherited cardiac conditions

KW - Provocation testing

KW - Sudden Arrhythmic Death Syndrome

KW - Sudden death

KW - Sudden Unexplained Death in the Young

UR - http://www.scopus.com/inward/record.url?scp=85122497003&partnerID=8YFLogxK

U2 - 10.1093/europace/euab176

DO - 10.1093/europace/euab176

M3 - Journal article

C2 - 34351417

VL - 24

SP - 331

EP - 339

JO - Europace

JF - Europace

SN - 1099-5129

IS - 2

ER -

ID: 68602857