Leiden University Scholarly Publications

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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.; ... ; Netherlands ACM Registry (2019)

The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update

Article / Letter to editor
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...Show moreBackground 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, through our website and patient conferences.Show less
Cardiomyopathies
Arrhythmogenic right ventricular dysplasia
Research design
Registries
All authors
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
Date
2019-10-01
Journal
Netherlands Heart Journal
Volume
27
Issue
10
Pages
480 - 486
DOI
doi:10.1007/s12471-019-1270-1