ARVD/C Patient Resources

Our Patient Resource Center provides information and resources for patients diagnosed with Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy (ARVD/C) and their families.

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Frequently Asked Questions

General ARVD/C Information

Causes and Genetics of ARVD/C

Family and ARVD/C

Living with ARVD/C

Request an Appointment

The Johns Hopkins ARVD/C program provides formal consultations and second opinions regarding the diagnosis or possible diagnosis of ARVD/C, management recommendations, family member screening, and genetic counseling. A full day of testing can be arranged by one of our coordinators/genetic counselors. A complete ARVD/C evaluation may consist of:

During an appointment with the ARVD/C program, patients are seen in consultation with Dr. Hugh Calkins, in addition to a genetic counselor, to discuss test results and provide guidance regarding further management. We can arrange for additional testing including genetic testing or invasive procedures (electrophysiology study, catheter ablation, sympathectomy, etc) if needed. Patients are also invited to participate in various research opportunities.

Patient Registry

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.

Call Crystal Tichnell at 410-502-7161 to join our patient registry.

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.

European Registry

There is also an ARVD/C registry available to patients living in Europe. Please contact one of the following physicians for more information.

Country Contact Information
France Guy Fontaine, MD
Germany Thomas Wichter, MD
Greece Nikos Protonotarios, MD or Adalena Tsatsopoulou
Italy Andrea Nava, MD
United Kingdom William J. McKenna, MD

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External Organizations

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