The ARVD/C Patient Registry at Johns Hopkins is available to all patients with ARVD/C and their first-degree relatives (parents, siblings, and children). The goal of the registry is to clinically characterize ARVD/C patients and learn more about the natural history of the condition, range of severity and the genes that cause ARVD/C. This registry requires submission of medical records, a blood sample, and yearly follow-ups.
Once you submit a registration form, we will use your contact information to mail you the Johns Hopkins Notice of Privacy Practices, a form for Acknowledgement of Receipt of the Notice of Privacy Practices, a study consent form, a request for release of medical records, and an information brochure. If you choose to participate in the study, you will need to complete the forms and return them to us.
There is also an ARVD/C registry available to patients living in Europe. Please contact one of the following physicians for more information.
|France||Guy Fontaine, MD|
Tel: 01 45 21 25 94
|Germany||Thomas Wichter, MD|
Tel: 0049 251 8347585
|Italy||Andrea Nava, MD|
|United Kingdom||William J. McKenna, MD|
Tel: 020 7573 8841