1. The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update
- Author
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Bosman, L.P., Verstraelen, T.E., Lint, F.H.M. van, Cox, M.G.P.J., Groeneweg, J.A., Mast, T.P., Zwaag, P.A. van der, Volders, P.G.A., Evertz, R., Wong, L., Groot, N.M.S. de, Zeppenfeld, K., Heijden, J.F. van der, Berg, M.P. van den, Wilde, A.A.M., Asselbergs, F.W., Hauer, R.N.W., Riele, A.S.J.M. te, Tintelen, J.P. van, Baas, A.E., Barge-Schaapveld, D.Q.C.M., Boekholdt, S.M., Cramer, M.J.M., Dooijes, D., Jongbloed, J.D.H., Loh, P., Planken, R.N., Prakken, N.H.J., Smagt, J.J. van der, Wal, A.C. van der, Teske, A.J., Veen, T.A.B. van, Velthuis, B.K., Vink, A., Yap, S.C., Netherlands ACM Registry, Cardiology, ACS - Atherosclerosis & ischemic syndromes, ACS - Heart failure & arrhythmias, Human Genetics, Radiology and Nuclear Medicine, ACS - Pulmonary hypertension & thrombosis, ARD - Amsterdam Reproduction and Development, Cardiovascular Centre (CVC), Basic and Translational Research and Imaging Methodology Development in Groningen (BRIDGE), Cardiologie, MUMC+: MA Med Staf Spec Cardiologie (9), RS: CARIM - R2.04 - Arrhythmogenisis and cardiogenetics, Marketing & Supply Chain Management, RS: Carim - H04 Arrhythmogenesis and cardiogenetics, and Moleculaire Genetica
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Research design ,RIGHT-VENTRICULAR CARDIOMYOPATHY ,NON-COMPACTION ,medicine.medical_specialty ,Electronic data capture ,Vascular damage Radboud Institute for Health Sciences [Radboudumc 16] ,Cardiomyopathy ,Arrhythmogenic right ventricular dysplasia ,030204 cardiovascular system & hematology ,DIAGNOSIS ,RISK STRATIFICATION ,03 medical and health sciences ,All institutes and research themes of the Radboud University Medical Center ,0302 clinical medicine ,medicine ,Journal Article ,030212 general & internal medicine ,Registries ,business.industry ,Retrospective cohort study ,medicine.disease ,Cardiomyopathies ,3. Good health ,Data sharing ,Cohort ,Emergency medicine ,business ,Cardiology and Cardiovascular Medicine ,Original Article – Design Study Article ,Cohort study - Abstract
Background Clinical research on arrhythmogenic cardiomyopathy (ACM) is typically limited by small patient numbers, retrospective study designs, and inconsistent definitions. Aim To create a large national ACM patient cohort with a vast amount of uniformly collected high-quality data that is readily available for future research. Methods This is a multicentre, longitudinal, observational cohort study that includes (1) patients with a definite ACM diagnosis, (2) at-risk relatives of ACM patients, and (3) ACM-associated mutation carriers. At baseline and every follow-up visit, a medical history as well information regarding (non-)invasive tests is collected (e. g. electrocardiograms, Holter recordings, imaging and electrophysiological studies, pathology reports, etc.). Outcome data include (non-)sustained ventricular and atrial arrhythmias, heart failure, and (cardiac) death. Data are collected on a research electronic data capture (REDCap) platform in which every participating centre has its own restricted data access group, thus empowering local studies while facilitating data sharing. Discussion The Netherlands ACM Registry is a national observational cohort study of ACM patients and relatives. Prospective and retrospective data are obtained at multiple time points, enabling both cross-sectional and longitudinal research in a hypothesis-generating approach that extends beyond one specific research question. In so doing, this registry aims to (1) increase the scientific knowledge base on disease mechanisms, genetics, and novel diagnostic and treatment strategies of ACM; and (2) provide education for physicians and patients concerning ACM, e. g. through our website (www.acmregistry.nl) and patient conferences. Electronic supplementary material The online version of this article (10.1007/s12471-019-1270-1) contains supplementary material, which is available to authorized users.
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- 2019