{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,25]],"date-time":"2026-02-25T22:47:02Z","timestamp":1772059622750,"version":"3.50.1"},"reference-count":27,"publisher":"Oxford University Press (OUP)","issue":"7","license":[{"start":{"date-parts":[[2025,7,11]],"date-time":"2025-07-11T00:00:00Z","timestamp":1752192000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,11,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>Cardiomyopathies are a heterogeneous group of genetic disorders requiring specialised, multidisciplinary management to optimize patient outcomes. A critical aspect of care is the transition of paediatric patients to adult services, which varies significantly across healthcare systems.<\/jats:p>\n                    <jats:p>This study assessed current practices in care transition and multidisciplinary management of inherited and rare cardiomyopathies across specialised European centres within the European Reference Network for rare and low prevalence complex diseases of the heart network.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and results<\/jats:title>\n                    <jats:p>A 21-question survey was distributed to healthcare providers within the network. A single participant (i.e. cardiologist with expertise in the diagnosis and management of inherited and rare cardiomyopathies) from each centre was approached. Responses from 26 centres across 12 European countries were analysed using descriptive statistics to evaluate institutional characteristics, transition protocols, and multidisciplinary team involvement. While 81% of centres reported having a transition plan, only 42% implemented it for all patients, and 19% had no formal protocol. Multidisciplinary care was well integrated, with regular team discussions, though key professionals such as psychologists and nurses were often absent. The lack of structured transition programmes, inconsistent use of standardized protocols, and a shortage of specialists in cardiogenetics emerged as major unmet needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Significant variability exists in the transition and multidisciplinary care of patients with inherited and rare cardiomyopathies. Standardized transition protocols, greater involvement of multiple healthcare professionals, and enhanced training in cardiogenetics are needed to ensure continuity of care and improve patient care across Europe.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/ehjqcco\/qcaf055","type":"journal-article","created":{"date-parts":[[2025,7,11]],"date-time":"2025-07-11T11:00:38Z","timestamp":1752231638000},"page":"1155-1163","source":"Crossref","is-referenced-by-count":1,"title":["Current management of transition and multidisciplinary care of patients with inherited and rare cardiomyopathies in Europe: results of the European Reference Network for rare and low prevalence complex diseases of the heart"],"prefix":"10.1093","volume":"11","author":[{"given":"Emanuele","family":"Monda","sequence":"first","affiliation":[{"name":"Department of Translational Medical Sciences, Inherited and Rare Cardiovascular Diseases, University of Campania \u2018Luigi Vanvitelli\u2019, Monaldi Hospital , Via Leonardo Bianchi Naples 80131 ,","place":["Italy"]},{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0295-0440","authenticated-orcid":false,"given":"Elena","family":"Biagini","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Cardiology Unit, IRCSS Azienda Ospedaliero-Universitaria di Bologna , Bologna ,","place":["Italy"]}]},{"given":"Nico","family":"Blom","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Pediatrics, Division of Pediatric Cardiology, Leiden University Medical Center , Leiden ,","place":["the Netherlands"]}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1888-373X","authenticated-orcid":false,"given":"Fabrizio","family":"Drago","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Pediatric Cardiology and Cardiac Arrhythmia\/Syncope Unit, Bambino Ges\u00f9 Children's Hospital IRCCS , Rome ,","place":["Italy"]}]},{"given":"Ingrid","family":"Krapels","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Clinical Genetics, Maastricht University Medical Center ,","place":["the Netherlands"]}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8319-1460","authenticated-orcid":false,"given":"Alice","family":"Krebsov\u00e1","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Cardiology, Institute for Clinical and Experimental Medicine , Prague ,","place":["Czech Republic"]}]},{"given":"Karel","family":"Koubsky","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Children's Heart Centre, Second Faculty of Medicine, Charles University in Prague and Motol University Hospital , Prague ,","place":["Czech Republic"]}]},{"given":"Diala","family":"Khraiche","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Pediatric and Congenital Cardiology Unit, H\u00f4pital Necker Enfants Malades, M3C-Necker , Paris ,","place":["France"]}]},{"given":"Elisabete","family":"Martins","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Medicine, Faculty of Medicine, University of Porto , Porto ,","place":["Portugal"]}]},{"given":"Marco","family":"Merlo","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Cardiovascular Department, Azienda Sanitaria Universitaria Giuliano Isontina (ASUGI), University of Trieste ,","place":["Italy"]}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6432-0431","authenticated-orcid":false,"given":"Michelle","family":"Michels","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Cardiology, Thorax Center, Cardiovascular Institute, Erasmus Medical Center , Rotterdam ,","place":["the Netherlands"]}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6907-2799","authenticated-orcid":false,"given":"Katarzyna","family":"Mizia-Stec","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"First Department of Cardiology, Medical University of Silesia School of Medicine in Katowice , Katowice ,","place":["Poland"]}]},{"given":"Stellan","family":"M\u00f6rner","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Clinical Sciences, Pediatrics, Ume\u00e5 University , Ume\u00e5 ,","place":["Sweden"]}]},{"given":"Maria Luisa","family":"Pe\u00f1a Pe\u00f1a","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Cardiology, Virgen del Rocio University Hospital Cardiology and Cardiovascular Surgery Service , Sevilla ,","place":["Spain"]}]},{"given":"Ivo","family":"Planinc","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Cardiovascular Diseases, University of Zagreb School of Medicine and Univerisity Hospital Centre Zagreb , Zagreb ,","place":["Croatia"]}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8676-4874","authenticated-orcid":false,"given":"Tomas","family":"Robyns","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Cardiovascular Sciences, KU Leuven , Leuven 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,","place":["Denmark"]}]},{"given":"Cordula M","family":"Wolf","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Congenital Heart Defects and Pediatric Cardiology, TUM University Hospital German Heart Center , Munich ,","place":["Germany"]}]},{"given":"Nynke","family":"Hofman","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of Cardiology, Amsterdam UMC Location University of Amsterdam, Amsterdam Cardiovascular Science, Heart Failure and Arrhythmias ,","place":["the Netherlands"]}]},{"given":"Ahmad S","family":"Amin","sequence":"additional","affiliation":[{"name":"Member of the European Reference Network for Rare, low-Prevalence, or complex Diseases of the Heart (ERN GUARD-Heart)"},{"name":"Department of 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