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)
- 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.
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