Cardiomyopathies in children and adolescents: aetiology, management, and outcomes in the European Society of Cardiology EURObservational Research Programme Cardiomyopathy and Myocarditis Registry.

Cardiomyopathy Child Genetics Paediatric Registry

Journal

European heart journal
ISSN: 1522-9645
Titre abrégé: Eur Heart J
Pays: England
ID NLM: 8006263

Informations de publication

Date de publication:
01 Mar 2024
Historique:
received: 18 01 2022
revised: 05 02 2024
accepted: 08 02 2024
medline: 1 3 2024
pubmed: 1 3 2024
entrez: 1 3 2024
Statut: aheadofprint

Résumé

Childhood-onset cardiomyopathies are rare and poorly characterized. This study examined the baseline characteristics and 1-year follow-up of children with cardiomyopathy in the first European Cardiomyopathy Registry. Prospective data were collected on individuals aged 1-<18 years enrolled in the European Society of Cardiology EURObservational Research Programme Cardiomyopathy and Myocarditis long-term registry (June 2014-December 2016). A total of 633 individuals aged ≤18 years with hypertrophic [HCM; n = 388 (61.3%)], dilated [DCM; n = 206 (32.5%)], restrictive [RCM; n = 28 (4.4%)], and arrhythmogenic right ventricular cardiomyopathy [ARVC; n = 11 (1.7%)] were enrolled by 23 referral centres in 14 countries. Median age at diagnosis was 4.0 [interquartile range (IQR) 0-10] years, and there was a male predominance [n = 372 (58.8%)] across all subtypes, with the exception of DCM diagnosed <10 years of age; 621 (98.1%) patients were receiving cardiac medication and 80 (12.6%) had an implantable cardioverter-defibrillator. A total of 253 patients (253/535, 47.3%) had familial disease. Genetic testing was performed in 414 (67.8%) patients with a pathogenic or likely pathogenic variant reported in 250 (60.4%). Rare disease phenocopies were reported in 177 patients (28.0%) and were most frequent in patients under 10 years [142 (30.9%) vs. 35 (19.6%); P = .003]. Over a median follow-up of 12.5 months (IQR 11.3-15.3 months), 18 patients (3.3%) died [HCM n = 9 (2.6%), DCM n = 5 (3.0%), RCM n = 4 (16.0%)]. Heart failure events were most frequent in RCM patients (36.0%). The findings confirm the heterogeneous aetiology of childhood cardiomyopathies and show a high frequency of familial disease. Outcomes differed by cardiomyopathy subtype, highlighting a need for disease-specific evaluation and treatment.

Sections du résumé

BACKGROUND AND AIMS OBJECTIVE
Childhood-onset cardiomyopathies are rare and poorly characterized. This study examined the baseline characteristics and 1-year follow-up of children with cardiomyopathy in the first European Cardiomyopathy Registry.
METHODS METHODS
Prospective data were collected on individuals aged 1-<18 years enrolled in the European Society of Cardiology EURObservational Research Programme Cardiomyopathy and Myocarditis long-term registry (June 2014-December 2016).
RESULTS RESULTS
A total of 633 individuals aged ≤18 years with hypertrophic [HCM; n = 388 (61.3%)], dilated [DCM; n = 206 (32.5%)], restrictive [RCM; n = 28 (4.4%)], and arrhythmogenic right ventricular cardiomyopathy [ARVC; n = 11 (1.7%)] were enrolled by 23 referral centres in 14 countries. Median age at diagnosis was 4.0 [interquartile range (IQR) 0-10] years, and there was a male predominance [n = 372 (58.8%)] across all subtypes, with the exception of DCM diagnosed <10 years of age; 621 (98.1%) patients were receiving cardiac medication and 80 (12.6%) had an implantable cardioverter-defibrillator. A total of 253 patients (253/535, 47.3%) had familial disease. Genetic testing was performed in 414 (67.8%) patients with a pathogenic or likely pathogenic variant reported in 250 (60.4%). Rare disease phenocopies were reported in 177 patients (28.0%) and were most frequent in patients under 10 years [142 (30.9%) vs. 35 (19.6%); P = .003]. Over a median follow-up of 12.5 months (IQR 11.3-15.3 months), 18 patients (3.3%) died [HCM n = 9 (2.6%), DCM n = 5 (3.0%), RCM n = 4 (16.0%)]. Heart failure events were most frequent in RCM patients (36.0%).
CONCLUSIONS CONCLUSIONS
The findings confirm the heterogeneous aetiology of childhood cardiomyopathies and show a high frequency of familial disease. Outcomes differed by cardiomyopathy subtype, highlighting a need for disease-specific evaluation and treatment.

Identifiants

pubmed: 38427064
pii: 7617193
doi: 10.1093/eurheartj/ehae109
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Subventions

Organisme : Abbott Vascular Int
Organisme : Amgen Cardiovascular
Organisme : AstraZeneca
Organisme : Bayer AG
Organisme : Boehringer Ingelheim
Organisme : Boston Scientific
Organisme : Bristol Myers Squibb
Organisme : Pfizer Alliance
Organisme : Daiichi Sankyo Europe GmbH
Organisme : Alliance Daiichi Sankyo Europe GmbH
Organisme : Eli Lilly and Company
Organisme : Edwards
Organisme : Gedeon Richter Plc
Organisme : Menarini Int. Op
Organisme : MSD-Merck & Co
Organisme : Novartis Pharma AG
Organisme : ResMed
Organisme : Sanofi
Organisme : SERVIER
Organisme : Vifor

Investigateurs

R Ferrari (R)
A Alonso (A)
J Bax (J)
C Blomström-Lundqvist (C)
S Gielen (S)
P Lancellotti (P)
A P Maggioni (AP)
N Maniadakis (N)
F Pinto (F)
F Ruschitzka (F)
L Tavazzi (L)
P Vardas (P)
F Weidinger (F)
U Zeymer (U)
A Vahanian (A)
A Budaj (A)
N Dagres (N)
N Danchin (N)
V Delgado (V)
J Emberson (J)
O Friberg (O)
C P Gale (CP)
G Heyndrickx (G)
B Iung (B)
S James (S)
A P Kappetein (AP)
A P Maggioni (AP)
N Maniadakis (N)
K V Nagy (KV)
G Parati (G)
A-S Petronio (AS)
M Pietila (M)
E Prescott (E)
F Ruschitzka (F)
F Van de Werf (F)
F Weidinger (F)
U Zeymer (U)
C P Gale (CP)
B Beleslin (B)
A Budaj (A)
O Chioncel (O)
N Dagres (N)
N Danchin (N)
J Emberson (J)
D Erlinge (D)
M Glikson (M)
A Gray (A)
M Kayikcioglu (M)
A P Maggioni (AP)
K V Nagy (KV)
A Nedoshivin (A)
A-P Petronio (AP)
J W Roos-Hesselink (JW)
L Wallentin (L)
U Zeymer (U)
B A Popescu (BA)
D Adlam (D)
A L P Caforio (ALP)
D Capodanno (D)
M Dweck (M)
D Erlinge (D)
M Glikson (M)
J Hausleiter (J)
B Iung (B)
M Kayikcioglu (M)
P Ludman (P)
L Lund (L)
A P Maggioni (AP)
S Matskeplishvili (S)
B Meder (B)
K V Nagy (KV)
A Nedoshivin (A)
D Neglia (D)
A A Pasquet (AA)
J W Roos-Hesselink (JW)
F J Rossello (FJ)
S M Shaheen (SM)
A Torbica (A)
A Lida Caforio (AL)
Juan Ramon Gimeno Blanes (JRG)
P Hilippe Charron (PH)
P Erry Elliott (PE)
Juan Pablo Kaski (JP)
Aldo P Maggioni (AP)
Luigi Tavazzi (L)
Michal Tendera (M)
S Komissarova (S)
N Chakova (N)
S Niyazova (S)
S Mostafa (S)
J Pihkala (J)
T Ojala (T)
A Hiippala (A)
T Jarvinen (T)
D Bonnet (D)
D Khraiche (D)
I Szezepanski (I)
M Gorenflo (M)
R Arnold (R)
S Uhl (S)
V Ziesenitz (V)
A Jung (A)
E Roesch (E)
M Ilina (M)
J P Kaski (JP)
G Norrish (G)
E Field (E)
A Anastasakis (A)
K Ritsatos (K)
V Vlagkouli (V)
S Rammos (S)
G Kourelis (G)
G Vagenakis (G)
G Papadopoulos (G)
A Giannakopoulou (A)
E Karanasios (E)
P Papachristou (P)
G Servos (G)
E Biagini (E)
A Corsini (A)
C Gagliardi (C)
M Graziosi (M)
A Milandri (A)
L Ragni (L)
S Palmieri (S)
R Calabro (R)
G Pacileo (G)
M G Russo (MG)
G Limongelli (G)
M Caiazza (M)
A Cirillo (A)
G Del Giorno (G)
A Esposito (A)
S Tramonte (S)
F Valente (F)
R Gravino (R)
T Marrazzo (T)
D Masarone (D)
V Pazzanese (V)
A Rea (A)
M Rubino (M)
F Drago (F)
A Baban (A)
G Sinagra (G)
C Carriere (C)
M Merlo (M)
F Ramani (F)
M Bobbo (M)
B Dagata (B)
A Kavoliuniene (A)
A Krivickiene (A)
E Tamuleviciute-Prasciene (E)
M Viezelis (M)
F W Asselbergs (FW)
N De Jonge (N)
J H Kirkels (JH)
J Van Der Heijden (J)
L Van Laake (L)
A Sammani (A)
J Ajuluchukwu (J)
A Olusegun-Joseph (A)
E Ekure (E)
G Brzezinska-Rajszys (G)
L Ziolkowska (L)
A Boruc (A)
E Plodzien (E)
E Zaklyazminskaya (E)
S Dzemeshkevich (S)
E Kolbasova (E)
N Kotlukova (N)
V Rusinova (V)
A Cequier (A)
J Salazar-Mendiguchia (J)
J Gonzalez (J)
N Manito (N)
P Garcia-Pavia (P)
A Briceno (A)
M Cobo-Marcos (M)
F Dominguez (F)
J R Gimeno Blanes (JR)
F J Castro (FJ)
C Munoz Esparza (C)
M Sabater Molina (M)
M Sorli García (M)
D Lopez Cuenca (D)
P L Sanchez Fernandez (PL)
E Villacorta (E)
B Plata (B)
C Avila (C)
L Bravo (L)
E Diaz-Pelaez (E)
M Gallego-Delgado (M)
L Garcia-Cuenllas (L)
J E Lopez-Haldon (JE)
E M Cantero Perez (EM)
M L Pena Pena (ML)

Informations de copyright

© The Author(s) 2024. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Auteurs

Juan Pablo Kaski (JP)

Centre for Paediatric Inherited and Rare Cardiovascular Disease, University College London Institute of Cardiovascular Science and Great Ormond Street Hospital NHS Foundation Trust, 20 Guilford Street, WC1N 1DZ London, United Kingdom.

Gabrielle Norrish (G)

Centre for Paediatric Inherited and Rare Cardiovascular Disease, University College London Institute of Cardiovascular Science and Great Ormond Street Hospital NHS Foundation Trust, 20 Guilford Street, WC1N 1DZ London, United Kingdom.

Juan Ramon Gimeno Blanes (JR)

Department of Cardiology, Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, Spain.

Philippe Charron (P)

Assistance Publique-Hôpitaux de Paris, ICAN, Inserm UMR1166, Sorbonne Université, Centre de Référence des Maladies Cardiaques Héréditaires ou Rares, Hôpital Pitié-Salpêtrière, Paris, France.

Perry Elliott (P)

Centre for Inherited Cardiovascular Diseases, University College London and St. Bartholomew's Hospital, London, United Kingdom.

Luigi Tavazzi (L)

Department of Cardiology, Maria Cecilia Hospital, GVM Care&Research, Cotignola, Italy.

Michal Tendera (M)

Department of Cardiology and Structural Heart Disease, School of Medicine in Katowice, Medical University of Silesia, Katowice, Poland.

Cécile Laroche (C)

EURObservational Research Programme, European Society of Cardiology, Sophia-Antipolis, France.

Aldo P Maggioni (AP)

EURObservational Research Programme, European Society of Cardiology, Sophia-Antipolis, France.
Department of Cardiology, ANMCO Research Center, Florence, Italy.

Anwar Baban (A)

Cardiogenetic Centre, Medical and Surgical Department of Pediatric Cardiology, IRCCS, Bambino Gesù Children's Hospital, Rome, Italy.

Diala Khraiche (D)

Pediatric and Congenital Cardiology Unit, Hôpital Necker Enfants Malades, M3C-Necker, Paris, France.

Lidia Ziolkowska (L)

Pediatric Cardiology, The Children's Memorial Health Institute, Warsaw, Poland.

Giuseppe Limongelli (G)

Inherited and Heart Disease Unit, Monaldi Hospital, A.O. Colli (University of Campania 'Luigi Vanvitelli'), Naples, Italy.

Tiina Ojala (T)

Pediatric Cardiology, University of Helsinki and Helsinki University Hospital, Hospital for Children and Adolescents, Helsinki, Finland.

Matthias Gorenflo (M)

Pediatric Cardiology and Congenital Heart Diseases, University of Heidelberg, Heidelberg, Germany.

Aris Anastasakis (A)

Unit of Rare and Inherited CVD-Department of Cardiology, Kappa Unit, Onassis Cardiac Surgery Centre, Athens, Greece.

Shaimaa Mostafa (S)

Benha Faculty of Medicine, Cardiovascular Department, Benha University, Benha, Egypt.

Alida L P Caforio (ALP)

Cardiology, Department of Cardiological, Thoracic and Vascular Sciences and Public Health, University of Padua, Padua, Italy.

Classifications MeSH