@article{1d8441987fd444558cfb8f55fd8ed307,
title = "The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update",
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.& x202f;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, through our website and patient conferences.",
keywords = "Cardiomyopathies, Arrhythmogenic right ventricular dysplasia, Research design, Registries, RIGHT-VENTRICULAR CARDIOMYOPATHY, RISK STRATIFICATION, NON-COMPACTION, DIAGNOSIS",
author = "Bosman, {L. P.} and Verstraelen, {T. E.} and {van Lint}, {F. H. M.} and Cox, {M. G. P. J.} and Groeneweg, {J. A.} and Mast, {T. P.} and {van der Zwaag}, {P. A.} and Volders, {P. G. A.} and R. Evertz and L. Wong and {de Groot}, {N. M. S.} and K. Zeppenfeld and {van der Heijden}, {J. F.} and {van den Berg}, {M. P.} and Wilde, {A. A. M.} and Asselbergs, {F. W.} and Hauer, {R. N. W.} and {te Riele}, {A. S. J. M.} and {van Tintelen}, {J. P.} and Baas, {A. E.} and Barge-Schaapveld, {D. Q. C. M.} and Boekholdt, {S. M.} and Cramer, {M. J. M.} and D. Dooijes and Jongbloed, {J. D. H.} and P. Loh and Planken, {R. N.} and Prakken, {N. H. J.} and {van der Smagt}, {J. J.} and {van der Wal}, {A. C.} and Teske, {A. J.} and {van Veen}, {T. A. B.} and Velthuis, {B. K.} and A. Vink and Yap, {S. C.} and {The Netherlands Arrhythmogenic Cardiomyopathy Registry}",
note = "Funding Information: We acknowledge the work of many (PhD) students and researchers over the years, without whom we would have no data to include in the registry: M.?Bourfiss, R.W. Roudijk, L.M. van den Heuvel, J.C. Hoogendoorn, E.T. Hoorntje, W.P. te Rijdt, J.A. Offerhaus, L.M. Verheul, M.J. Kuiper, M.?Schurink, C.M. Roos, J.?Bonnes, and J.?Nas. Support from Netherlands Heart Institute (J.C.H. Weijers and E.P.A. van Iperen) is gratefully acknowledged. We are thankful to the ACM patients and relatives for their participation in this registry. A.F. Baas (UMC Utrecht, Department of Medical Genetics, Utrecht, The Netherlands); D.Q.C.M. Barge-Schaapveld (LUMC, Department of Clinical Genetics, Leiden, The Netherlands); S.M. Boekholdt (Amsterdam UMC, Heart Center, Department of Clinical and Experimental Cardiology, Amsterdam, The Netherlands); M.J.M. Cramer (UMC Utrecht, Department of Cardiology, University of Utrecht, Utrecht, The Netherlands); D.?Dooijes (UMC Utrecht, Department of Genetics, Utrecht University, Utrecht, The Netherlands); J.D.H. Jongbloed (UMC Groningen, Department of Genetics, Groningen, The Netherlands); P.?Loh (UMC Utrecht, Department of Cardiology, University of Utrecht, Utrecht, The Netherlands); R.N. Planken (Amsterdam UMC, AMC, Department of Radiology and Nuclear Medicine, Amsterdam, The Netherlands); N.H.J. Prakken (UMC Groningen, Department of Radiology, Groningen, The Netherlands); J.J. van der Smagt (UMC Utrecht, Department of Genetics, Utrecht University, Utrecht, The Netherlands); A.C. van der Wal (Amsterdam UMC, AMC, Department of Pathology, Amsterdam, The Netherlands); A.J. Teske (UMC Utrecht, Department of Cardiology, University of Utrecht, Utrecht, The Netherlands); T.A.B. van Veen (UMC Utrecht, Department of Medical Physiology, University of Utrecht, Utrecht, The Netherlands); B.K. Velthuis (UMC Utrecht, Department of Radiology, University of Utrecht, Utrecht, The Netherlands); A.?Vink (UMC Utrecht, Department of Pathology, University of Utrecht, Utrecht, The Netherlands); S.C. Yap (Erasmus MC, Department of Cardiology, Rotterdam, The Netherlands) Publisher Copyright: {\textcopyright} 2019, The Author(s).",
year = "2019",
month = oct,
doi = "10.1007/s12471-019-1270-1",
language = "English",
volume = "27",
pages = "480--486",
journal = "Netherlands Heart Journal",
issn = "1568-5888",
publisher = "Bohn Stafleu van Loghum",
number = "10",
}