Condition-Specific Registries

ERN GUARD-Heart members have established patient registries for the following cardiac diseases or disease-causing genes:

  • Arrhythmogenic right ventricular cardiomyopathy (ARVC)
  • Catecholaminergic polymorphic ventricular tachycardia (CPVT)
  • CALM genes
  • Long QT syndrome type 5 (KCNE1 gene)
  • Long QT syndrome (LQTS)
  • Short QT syndrome (SQTS)
  • PRKAG2 gene

How to participate?

For including patients in the registries: contact the registry coordinator by e-mail. He/she will request for a log-in account. Only registry leaders and registry coordinators have access to the complete data of the registry. As a participant you will receive access to the patients of your centre.

Consent form

Consent of the patient is required. For new patients and families, a dedicated ERN consent form should be used and stored at the local centre where the patient is included. This consent form is available at the IT platform, the Clinical Patient Management System (CPMS) and upon request at the project management office of ERN GUARD-Heart.

Questions?

For general questions about the existing registries, please contact Nynke Hofman (project manager of ERN GUARD-Heart): n.hofman@amc.nl.

Suggestions for new registries are welcome and will first be discussed at the board meeting of ERN GUARD-Heart.

Registry Registry Leader Registry Coordinator Link/Hosting
CALM Genes Registry Peter Schwartz / Lia Crotti

(Instituto Auxologico Italiano IRCCS, Milan, Italy)

Carla Spazzolini REDCap Heart Institute

Hosting in Amsterdam UMC, Amsterdam

CPVT Registry Arthur Wilde

(Amsterdam UMC, Amsterdam, The Netherlands)

Krystien Lieve Open Clinica

Hosting in Amsterdam UMC, Amsterdam

SQTS Registry Silvia Priori / Andrea Mazzanti

(Instituti Clinici Scientifici Maugeri, Pavia, Italy)

Maira Marino REDCap Heart Institute

Hosting in Amsterdam UMC, Amsterdam

PRKAG2 Gene Registry Philippe Charron

(AP-HP Pitié Salpêtrière Hospital, Paris, France)

Gabriel Laurent REDCap Heart Institute

Hosting in Amsterdam UMC, Amsterdam

 

LQT5 (KCNE1) Registry Jason Roberts

(University Hospital London, Ontario, Canada)

Jason Roberts REDCap Lawson Research

Hosting in Canada

ARVC (PLN) Registry Peter van Tintelen

(UMC Utrecht, Amsterdam, The Netherlands)

Peter van Tintelen /

Nynke Hofman

 

REDCap Heart Institute

Hosting in Amsterdam UMC, Amsterdam

LQTS (GWAS) Registry Connie Bezzina

(Amsterdam UMC, Amsterdam, The Netherlands)

Najim Lahrouchi REDCap Heart Institute

Hosting in Amsterdam UMC, Amsterdam

Status: under development

Legenda
Registry = name of the registry
Registry Leader = name of the leader of the registry
Registry Coordinator = name and email address of contactperson
Link/Hosting = Place where registry is hosted and link to website