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17-04-2019 | Original Article – Design Study Article | Uitgave 10/2019 Open Access

Netherlands Heart Journal 10/2019

The Netherlands Arrhythmogenic Cardiomyopathy Registry: design and status update

Tijdschrift:
Netherlands Heart Journal > Uitgave 10/2019
Auteurs:
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
Belangrijke opmerkingen

Electronic supplementary material

The online version of this article (https://​doi.​org/​10.​1007/​s12471-019-1270-1) contains supplementary material, which is available to authorized users.
A.S.J.M. te Riele and J.P. van Tintelen contributed equally and are joint senior authors.

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.

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Netherlands Heart Journal

Het Netherlands Heart Journal wordt uitgegeven in samenwerking met de Nederlandse Vereniging voor Cardiologie en de Nederlandse Hartstichting. Het tijdschrift is Engelstalig en wordt gratis beschikbaa ...

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