{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T14:42:11Z","timestamp":1787582531265,"version":"build-2736575974"},"reference-count":30,"publisher":"Springer Science and Business Media LLC","issue":"9","license":[{"start":{"date-parts":[[2026,8,10]],"date-time":"2026-08-10T00:00:00Z","timestamp":1786320000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,8,10]],"date-time":"2026-08-10T00:00:00Z","timestamp":1786320000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100002996","name":"Hartstichting","doi-asserted-by":"publisher","award":["01-003-2022-0358"],"award-info":[{"award-number":["01-003-2022-0358"]}],"id":[{"id":"10.13039\/501100002996","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100002996","name":"Hartstichting","doi-asserted-by":"publisher","award":["2020B005"],"award-info":[{"award-number":["2020B005"]}],"id":[{"id":"10.13039\/501100002996","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Neth Heart J"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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\u00a0need for broad, inclusive, high-quality prospective multi-center registries to better analyze these phenotypes, provide accurate risk stratification, and tailor therapies. The Dutch Cardiomyopathy Registry (DCR) will serve as a\u00a0longitudinal registry for all cardiomyopathy patients, exploiting previously built local databases, allowing adequately powered research studies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The DCR is a\u00a0multi-center observational registry that unites all Dutch University Medical centers. The registry will have local and central shared databases, which will be hosted and coordinated by the Netherlands Heart Institute. Patients with an established cardiomyopathy diagnosis and carriers of pathogenic or likely-pathogenic cardiomyopathy gene variants will be included. Furthermore, selected family members and individuals who are referred for screening for potential cardiomyopathy are eligible for inclusion. The subjects will receive, per best clinical practice, guideline-recommended diagnostics and treatment. Clinical data will be collected from clinical care at baseline and follow-up, including clinical visits, imaging studies, laboratory assessments, ECG, and additional functional tests. Outcome data consists of clinical performance status, cardiovascular complications and major adverse events, recorded through regular electronic health record files.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The DCR will function as a\u00a0national database, providing relevant information on epidemiology, demographics, natural history, diagnosis, and treatment. This will aid risk prediction and monitoring of new therapies. The DCR can identify patients who are eligible for future studies, including registry-based research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s12471-026-02063-5","type":"journal-article","created":{"date-parts":[[2026,8,10]],"date-time":"2026-08-10T08:48:00Z","timestamp":1786351680000},"page":"288-298","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["The Dutch cardiomyopathy registry (DCR); rationale and registry design"],"prefix":"10.1007","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2634-4667","authenticated-orcid":false,"given":"Peter-Paul","family":"Zwetsloot","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michiel T. H. M.","family":"Henkens","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erik P. 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M.","family":"van Empel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hans-Peter","family":"Brunner-La Rocca","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D. Job A. J.","family":"Verdonschot","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Moniek G. P. 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Peter-Paul Zwetsloot has received an eScience Fellowship (2024 cohort, eScience Center) as an ambassador for federated registry approaches in clinical research. Michiel\u00a0T.H.M. Henkens has no relevant disclosures. Erik P.A. van Iperen has no relevant disclosures. Michiel Minten has no relevant disclosures. Evelien van der Schaaf-de Wolf has no relevant disclosures. The UMC Utrecht, which employs several of the authors, has received research grants and\/or fees from Abbott and Medtronic. Linda W. van Laake MD, PhD serves as Associate Editor of the Netherlands Heart Journal. Anneline\u00a0S.J.M. te Riele MD, PhD received speaker fees from Bristol Meyers Squibb and consultancy fees from Tenaya Therapeutics, LEXEO, and Rocket Pharmaceuticals and research grants from HORIZON Cardiogenomics Pathfinder IMPACT and ZonMW Clinical Fellows grant (grant no 09032232310042). Pim van der Harst, MD, PhD serves as the current Editor-in-Chief for The Netherlands Heart Journal. Jessica van Setten, PhD is funded by European Union Horizon 2020 programme [101136962]. Vanessa\u00a0P.M. van Empel, MD, PhD has no relevant disclosures. Hans-Peter Brunner-La Rocca, MD has no relevant disclosures. Job A.J. Verdonschot MD, PhD has received research grants from the Dutch Heart Foundation (Dekker Clinical Scientist), the Dutch Research Council (ZonMW Veni), the MUMC+ Academic Funds and the ERA4HEALTH CARDINNOV (ID-PRESERVED) grant. Moniek\u00a0G.P.J. Cox MD, PhD has no relevant disclosures. Imke Christiaans, MD, PhD has no relevant disclosures. Nina Ajmone Marsan, MD, PhD has received speaker fees from GE Healthcare, Philips Ultrasound, Abbott Vascular, Edwards Lifesciences and Pfizer and research grant from Pfizer, Astra Zeneca, Edwards Lifesciences and Pie Medical. Karin van Spaendonck-Zwarts, MD, PhD has no relevant disclosures. Daniela QCM Barge-Schaapveld, MD, PhD has no relevant disclosures. Etienne Cramer, MD, PhD has no relevant disclosures. Yvonne M. Hoedemakers, MD, PhD has no relevant disclosures. Michelle Michels, MD, PhD has had speaker engagements with and\/or received fees from and\/or served on an advisory board for Bristol Myers Squibb, Cytokinetics, Alnylam, Imbria, Bayer, Sanofi-Genzyme, Biomarin, and serves as Associate Editor of the Netherlands Heart Journal. Judith M.A. Verhagen, MD, PhD is supported by funding from Stichting Vrienden van het Sophia (WAR2025-52) and an Erasmus MC Young Investigator Grant. Henk\u00a0S. Schipper, MD, PhD has no relevant disclosures. Malou van den Boogaard, MD, PhD has no relevant disclosures. Folkert\u00a0W. Asselbergs, MD, PhD has no relevant disclosures. Dennis van Veghel, PhD has no relevant disclosures. Katja Zeppenfeld, MD, PhD received a\u00a0research grant from Biosense Webster (J&J). Robin Nijveldt, MD, PhD received a\u00a0research grant from Philips Volcano and Biotronik, and speaker fees from Bristol Myers Squibb, Pfizer, Sanofi Genzyme, and Daiichi Sankyo, and serves as Associate Editor of the Netherlands Heart Journal. Peter van Tintelen, MD, PhD has received research grants; HORIZON Cardiogenomics Pathfinder IMPACT. Peter van der Meer, MD, PhD has no relevant disclosures. J. Wouter Jukema, MD, PhD serves as Associate Editor of the Netherlands Heart Journal. Jolanda van der Velden, PhD received unrestricted research grants from Roche Diagnostics and Novartis, served on advisory boards or received speaker\u2019s fees from Roche Diagnostics, Boehringer Ingelheim, AstraZeneca, Novo Nordisk, received payment for expert testimony from Novartis and acts as coordinator of the public-private partnership IHI 101112022 iCARE4CVD. She received research grants from NWO-ZonMW (91818602 VICI grant), ZonMW and Heart Foundation for the translational research program, project 95105003; the Dutch Cardiovascular Alliance (DCVA) cardiomyopathy grant Double Dose 2021; the Leducq Foundation grant number 20CVD01; Proper therapy funded by the Association of Collaborating Health Foundations and ZonMW within the Human models\u00a02.0 call; CARMA funded by NovoNordisk and Heart Foundation, and Hearttwin funded by ZonMW. Connie Bezzina acknowledges support from the Pathfinder Cardiogenomics programme of the European Innovation Council of the European Union (DCM-NEXT and NaV1.5-CARED projects). Rudolf de Boer, MD, PhD has had speaker engagements with and\/or received fees from and\/or served on an advisory board for Abbott, AstraZeneca, Bristol Myers Squibb, NovoNordisk, Roche, and Zoll; Dr. de Boer received travel support from Abbott and NovoNordisk. Dr. de Boer has received research grants from the Netherlands Heart Foundation (NHS grants 2020B005; 01-003-2022-0358), a\u00a0NHS grant co-funded by ERA4Health (GA grant 101095426 of the EU Horizon Europe Research and Innovation Programme), and by the European Research Council (ERC CoG 818715). Stephane Heymans, MD, PhD. Prof. Heymans receives personal fees for independent scientific advice on early development in the field of heart failure for AstraZeneca, Ribocure Pharmaceuticals, Novo Nordisk, Sanofi, Pfizer, Merck, Vrata, Apta Therapeutics, and CSL Behring, and receives research support from AstraZeneca and CSL Behring related to early clinical development in cardiomyopathies. receive(d\/s) research funding related to cardiomyopathies from the European Union Commission\u2019s Seventh Framework programme under grant agreement N\u00b0 305507 (HOMAGE); IMI2-CARDIATEAM, from the Innovative Medicines Initiative\u00a02 Joint Undertaking (JU) under grant agreement N\u00b0 821508; The JU receives support from the European Union\u2019s Horizon 2020 research and innovation programme and EFPIA; DCM NEXT, HORIZON-EIC-2022-PATHFINDERCHALLENGES\u00a001 \u201cCARDIOGENOMICS\u201d from HORIZON European Innovation Council Grants\/European Commission, under grant agreement 101115416; grant of Dutch Research Council Open Call ZonMW-Metacor. SH is a\u00a0member of the European Reference Network for rare low prevalence and complex diseases of the heart, ERN GUARD-Heart.","order":1,"name":"Ethics","label":"Conflicts of interest","group":{"name":"EthicsHeading","label":"Declarations"}}]}}