This page will link to a pre-registration form for the Johns Hopkins/North American Stress Cardiomyopathy Patient Registry based in Baltimore, Maryland. The Stress Cardiomyopathy Registry at John Hopkins (Clinical and Genetic Investigations of Stress Cardiomyopathy) is available to ALL patients with a diagnosis of stress cardiomyopathy and their first-degree relatives (parents, siblings, and children). If you think that you or a loved one may have had stress cardiomyopathy you are still eligible for this registry. The Johns Hopkins Stress Cardiomyopahty Registry involves submission of your medical records, a blood sample, and may or may not involve follow-up with us at Johns Hopkins University. The goal of the registry is to clinically characterize Stress Cardiomyopathy patients. We hope to learn more about the natural history of the condition, the range of severity, and the genes that cause Stress Cardiomyopathy. If you have questions or concerns about the Johns Hopkins Registry, please contact us at brokenheart@jhmi.edu for more information.
Our registration form for the registry is underway and will be functional in the Spring of 2005. Once it is online, you will be able to 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, and a request for release of medical records. 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. |
