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 will end in 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.