The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update

L. P. Bosman, T. E. Verstraelen, F. H. M. van Lint, M. G. P. J. Cox, J. A. Groeneweg, T. P. Mast, P. A. van der Zwaag, P. G. A. Volders, R. Evertz, L. Wong, N. M. S. de Groot, K. Zeppenfeld, J. F. van der Heijden, M. P. van den Berg, A. A. M. Wilde, F. W. Asselbergs, R. N. W. Hauer, A. S. J. M. te Riele, J. P. van Tintelen, Netherlands ACM Registry

Research output: Contribution to journalArticleAcademicpeer-review

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.
Original languageEnglish
Pages (from-to)480-486
JournalNetherlands Heart Journal
Volume27
Issue number10
DOIs
Publication statusPublished - 1 Oct 2019

Cite this

Bosman, L. P., Verstraelen, T. E., van Lint, F. H. M., Cox, M. G. P. J., Groeneweg, J. A., Mast, T. P., ... Netherlands ACM Registry (2019). The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update. Netherlands Heart Journal, 27(10), 480-486. https://doi.org/10.1007/s12471-019-1270-1