238th ENMC International Workshop: Updating management recommendations of cardiac dystrophinopathyHoofddorp, The Netherlands, 30 November - 2 December 2018

238th ENMC International Workshop: Updating management recommendations of cardiac dystrophinopathyHoofddorp, The Netherlands, 30 November - 2 December 2018

•For families, there is no ‘pre-symptomatic’ phase once dystrophinopathy is diagnosed.•A care-coordinator facilitated, multi-specialty adult follow-up model is advocated.•Hearts of patients with DMD should be considered abnormal ‘from the start’.•Ventricular dysfunction is preceded by changes, detec...

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Veröffentlicht in:Neuromuscular disorders : NMD 2019-08, Vol.29 (8), p.634-643
Hauptverfasser: Bourke, John P., Guglieri, Michela, Duboc, Denis, Aartsma-Rus, Annemieke, Bandali, Alykhan, Bennett, Neil, Cools, Bjorn, Cripe, Linda, de Groot, Imelda, Dittrich, Sven, Florian, Anca, Furlong, Pat, Goemans, Nathalie, Hor, Kan, van Leperen, Frank, MacGowan, Guy, McNally, Elizabeth, Pegoraro, Elena, Politano, Luisa, Sediva, Marie, Stara, Veronika, Timmermans, Janneke, Vroom, Elizabeth, Wahbi, Karim
Format: Artikel
Sprache:eng
Schlagworte:
Cardiac dystrophinopathy
Cardiac imaging
Device therapy
Heart failure drugs
Online-Zugang:Volltext
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Zusammenfassung:•For families, there is no ‘pre-symptomatic’ phase once dystrophinopathy is diagnosed.•A care-coordinator facilitated, multi-specialty adult follow-up model is advocated.•Hearts of patients with DMD should be considered abnormal ‘from the start’.•Ventricular dysfunction is preceded by changes, detectable by cardiac MR-imaging.•A patient's phenotype and not genotype should guide clinical decision-making.
ISSN:0960-8966
1873-2364
DOI:10.1016/j.nmd.2019.06.598