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Peer-Reviewed Publication
Neth Heart J2026August 10, 2026Journal Article

The Dutch cardiomyopathy registry (DCR); rationale and registry design.

Peter-Paul Zwetsloot1,2,3, Michiel T H M Henkens4,5, Erik P A van Iperen4, Michiel Minten6, Evelien van der Schaaf-de Wolf4, Linda W van Laake7,8, Anneline S J M Te Riele7,8, Pim van der Harst7,8, Jessica van Setten8, Vanessa P M van Empel7,9, Hans-Peter Brunner-La Rocca7,9, D Job A J Verdonschot7,10, Moniek G P J Cox11, Imke Christiaans12, Nina Ajmone Marsan13, Karin van Spaendonck-Zwarts14, Daniela Qcm Barge-Schaapveld14, Etienne Cramer15, Yvonne M Hoedemakers16, Michelle Michels17,7, Judith M A Verhagen7,18, Henk S Schipper7,19, Malou van den Boogaard7,20,21, Folkert W Asselbergs7,20, Dennis van Veghel22, Katja Zeppenfeld13, Robin Nijveldt15, Peter van Tintelen7,23, Peter van der Meer12, J Wouter Jukema4,14, Jolanda van der Velden4,21,24, Connie R Bezzina7,21, Rudolf A de Boer17,7, Stephane R B Heymans7,9,
1Netherlands Heart Institute, Utrecht, The Netherlands. p.p.m.zwetsloot@heart-institute.nl.
2Thoraxcenter, Department of Cardiology, Erasmus Medical Center, Cardiovascular Institute, Rotterdam, The Netherlands. p.p.m.zwetsloot@heart-institute.nl.
3European Reference Network for rare, low prevalence and complex diseases of the heart: ERN GUARD-Heart, ERN GUARDHEART, Rotterdam, The Netherlands. p.p.m.zwetsloot@heart-institute.nl.
4Netherlands Heart Institute, Utrecht, The Netherlands.
5Department of Pathology, Maastricht University Medical Center (MUMC+), Maastricht, The Netherlands.
6MEMIC, Center for data and information management Maastricht University, Maastricht, The Netherlands.
7European Reference Network for rare, low prevalence and complex diseases of the heart: ERN GUARD-Heart, ERN GUARDHEART, Rotterdam, The Netherlands.
8Department of Cardiology, University Medical Center Utrecht and Utrecht University, Utrecht, The Netherlands.
9Department of Cardiology, Maastricht University Medical Center, Cardiovascular Research Institute Maastricht (CARIM), Maastricht, The Netherlands.
10Department of Clinical Genetics, Maastricht University, Cardiovascular Research Institute Maastricht (CARIM), Maastricht, The Netherlands.
11Department of Cardiology, University Medical Center Groningen, Groningen, The Netherlands.
12Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
13Department of Cardiology, Leiden University Medical Center, Leiden, The Netherlands.
14Department of Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands.
15Department of Cardiology, Radboud University Medical Center, Nijmegen, The Netherlands.
16Department of Clinical Genetics, Radboud University Medical Center, Nijmegen, The Netherlands.
17Thoraxcenter, Department of Cardiology, Erasmus Medical Center, Cardiovascular Institute, Rotterdam, The Netherlands.
18Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
19Department of Pediatric Cardiology, Erasmus MC: Sophia's Children Hospital, Rotterdam, The Netherlands.
20Department of Cardiology, Amsterdam University Medical Center, Amsterdam, The Netherlands.
21Department of Experimental Cardiology, Amsterdam University Medical Center, Amsterdam, The Netherlands.
22Netherlands Heart Registration, Utrecht, The Netherlands.
23Department of Clinical Genetics, University Medical Center Utrecht, Utrecht, The Netherlands.
24Department of Physiology, Amsterdam Cardiovascular Sciences, Amsterdam UMC, Amsterdam, The Netherlands.
PubMed DOI

Abstract

BACKGROUND: Cardiomyopathies are important causes of arrhythmias, sudden cardiac death, and heart failure. With accumulating knowledge in clinical, genetic, and molecular phenotyping, the number of distinct disease entities is growing. There is a need for broad, inclusive, high-quality prospective multi-center registries to better analyze these phenotypes, provide accurate risk stratification, and…

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