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

NIH Study

The Multidisciplinary Study of Right Ventricular Dysplasia (North American Registry) is a five-year study funded by The National Institutes of Health. The primary goal is to identify 100 patients with definite ARVD and their family members. The study is recruiting newly diagnosed patients who do not yet have an ICD/defibrillator or have had an ICD implanted within the last 6 months. Each of these patients will be evaluated with standardized non-invasive and invasive tests to confirm the diagnosis at one of the participating enrolling centers. Family members of an affected individual will also be asked to undergo non-invasive testing. Several of the tests will be sent to carefully chosen core laboratories for their expert opinion. Genetic studies will be carried out in an effort to find the genes responsible for ARVD and to see how the genes affect the onset, course, and severity of the disease in an individual or in a family. Clinical and genetic characterizations of these individuals and their family members should improve diagnostic techniques, leading to more accurate risk stratification, and ultimately, therapies to treat the disease rather than the symptoms. All tests are clinically indicated and will be billed to insurance. Please go to www.arvd.org for a list of enrolling centers and for more information on this study. If you have questions or concerns about the North American Registry, please contact Kathy Gear at (520) 626-6262.

Enrollment for the current NIH Multidisciplinary Study of Right Ventricular Dysplasia ended June 2007. The Johns Hopkins ARVD Program submitted a grant to the NIH in the fall of 2005 to continue the efforts of the current study. This phase of the grant will focus on progression of the disease, as well as the relationship between genetic and clinical findings.