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
- 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?
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 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.
For general questions about the existing registries, please contact Nynke Hofman (project manager of ERN GUARD-Heart): firstname.lastname@example.org.
Suggestions for new registries are welcome and will first be discussed at the board meeting of ERN GUARD-Heart.
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