ARVC Registry

The Zurich ARVC Program maintains a multicenter ARVC registry. All ARVC patients ≥ 15 years of age can enter this registry. We encourage all ARVC patients and their first degree relatives to participate in this registry. Systematic capture and analysis of the Swiss ARVC cohort and similar cohorts from other countries will allow us to better understand the clinical characteristics of this complex disease. If you have suitable patients for our ARVC registry and/or one of our prospective studies, please do not hesitate to contact us. In order to prospectively capture patients’ data in our registry, each patient will have to sign an informed consent form. The diagnostic tests that are going to be performed after inclusion into the registry are usually the same as in clinical routine practice. Blood samples will be kept deep-frozen. A patient questionnaire will be sent to the patients to update our data. You and your patients can download this questionnaire and the registry information letter below. Please contact the ARVC Registry in order to get the informed consent forms for the registry and for genetic testing, our team will be glad to assist. We can also send the forms by e-mail or post and we can help you to fill it out by telephone. A clinical assessment of an ARVC patient should be performed at least once yearly.