ERN GUARD-Heart members have established patient registries for the following rare heart-diseases/disease-groups: ARVC, CPVT, CALM-genes, LQT5 (KCNE1-gene), LQTS, SQTS, and PRKAG2-gene.
How to participate?
For including patients in the registries: please check the minimal number of patients to include in the table and contact the specific study-coordinator by e-mail. He/ she will request for a log-in account.
Only the leaders and study-coordinators have access to the complete data of the registry. As a participant you will receive access to the patients of your own hospital/ institute.
Consent of the patient is required. For new patients and families the new designed ERN-consent form should be used and stored at the local HCPs. This consent form is available at the IT-platform.
For general questions about the existing registries, please contact Nynke Hofman (project/ research manager ERN GUARD-Heart): email@example.com.
Ideas for new registries should be discussed at the board meeting of ERN GUARD-Heart first.
Registry = name of the registry
Led by = name of the leader of the registry
Study coordinator = name and email address of contactperson
Link / Hosting = Place where registry is hosted and link to website
Nr. of patients = minimal number of patient to include