This is a pre-registration form for the Johns Hopkins ARVD Patient Registry based in Baltimore, Maryland. This form will also be used to determine the eligibility of newly diagnosed individuals for the North American ARVD Registry based in Tucson, Arizona, (also referred to as the NIH-funded Multidisciplinary Study of Right Ventricular Dysplasia).

The ARVD Patient Registry at John Hopkins (Clinical and Genetic Investigations of Right Ventricular Dysplasia) is available to ALL patients with ARVD and their first-degree relatives (parents, siblings, and children). If you have been diagnosed with ARVD and have an ICD or are otherwise ineligible to participate in the Multidisciplinary Study of Right Ventricular Dysplasia, you are still eligible for this registry. The Johns Hopkins ARVD Registry involves submission of your medical records, a blood sample, and yearly follow-up. The goal of the registry is to clinically characterize ARVD patients. We hope to learn more about the natural history of the condition, the range of severity, and the genes that cause ARVD. If you have questions or concerns about the Johns Hopkins Registry, please contact Crystal Tichnell at 410-502-7161 or Cindy James at 443-287-5985.

Once you submit the registration form on this site, we will use your contact information only to mail you the Johns Hopkins Notice of Privacy Practices, an Acknowledgement of Receipt of the Notice of Privacy Practices Form, a consent form for the study, a request for release of medical records, and a brochure. If you choose to be in the study, you will need to complete the forms and return them to us. Additionally, we will add your pre-registration information to the study database. If you choose not to be in the study, your pre-registration data will be deleted from the pre-registration database.

European Registry

There is also an ARVD Registry available for patients living in Europe . Please contact one of the following doctors for more information or visit http://anpat.unipd.it/ARVC/

Andrea Nava, MD (Italy) Tel: 39.49.876.2176
Email: andrea.nava@unipd.it

Thomas Wichter, MD (Germany) Tel: 0049 251 8347585
Email: wichtet@uni-muenster.de

Guy Fontaine, MD (France) Tel: 01 45 21 25 94
Email: guy.fontaine@bct.ap-hop-paris.fr

William J. McKenna, MD (United Kingdom) Tel: 020 7573 8841
Email: william.mckenna@uclh.nhs.uk

Nikos Protonotarios, MD (Greece) Tel: 0030 2285023234
Email: nprotnaxos@altecnet.gr, adalena@otenet.gr