Condition-Specific Registries

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

  • Andersen-Tawil syndrome
  • Arrhythmogenic right ventricular cardiomyopathy (ARVC)
  • CACNA1C
  • Catecholaminergic polymorphic ventricular tachycardia (CPVT)
  • CALM genes
  • FHL1
  • LMNA (to be launched soon)
  • Long QT syndrome type 5 (KCNE1 gene)
  • Long QT syndrome (LQTS)
  • Short QT syndrome (SQTS)
  • PRKAG2 gene

 

How to participate?

Before participation in ERN GUARD-Heart registries, please be aware of your local informed consent procedures, and local laws and regulations with regard to data protection and collection of patient data in European registries. It may be required to contact the Medical Ethical Committee and/or Data Protection Officer of your institution. For specific or more detailed information about an ERN GUARD-Heart registry and available documents to facilitate participation, you can contact the Registry Manager of the Registry (see table for contact information) or the ERN management office by e-mail.

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 freely in multiple languages at the ERN CPMS training website 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@amsterdamumc.nl.

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

Registry Registry Coordinator Registry Manager Link/Hosting
Andersen-Tawil syndrome Registry Jacob Tfelt-Hansen

(Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark)

Stine Bøttcher Jacobsen REDCap Copenhagen

Hosting in Copenhagen

ARVC (PLN) Registry Peter van Tintelen

(UMC Utrecht, Amsterdam, The Netherlands)

Peter van Tintelen /

Steven Muller

REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

CACNA1C Registry Fabrizio Drago Anwar Baban REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

CALM Genes Registry Peter Schwartz / Lia Crotti

(Instituto Auxologico Italiano IRCCS, Milan, Italy)

Carla Spazzolini REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

CPVT Registry Arthur Wilde

(Amsterdam UMC, Amsterdam, The Netherlands)

Auke Bergeman REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

FHL1 Registry Ruxandra Jurcut

(Emergency Institute for Cardiovascular Diseases, Bucharest, Romania)

Ruxandra Jurcut REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

 

LMNA Registry Karim Wahbi

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

Karim Wahbi REDCap Netherlands 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

LQTS (GWAS) Registry Connie Bezzina

(Amsterdam UMC, Amsterdam, The Netherlands)

Najim Lahrouchi REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

PRKAG2 Gene Registry Pablo Garcia Pavia

(University Hospital Puerta de Hierro Majadahonda, Madrid, Spain)

Fernando Dominguez REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

SQTS Registry Silvia Priori / Andrea Mazzanti

(Instituti Clinici Scientifici Maugeri, Pavia, Italy)

Maira Marino REDCap Netherlands Heart Institute

Hosting in Amsterdam UMC, Amsterdam

 

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