The EBCare Registry is a resource for individuals and families affected by all forms of epidermolysis bullosa (EB) and qualified researchers working on approved EB research projects. The Registry itself is a research project and the data collected through the Registry will help characterize the condition of people living with all types of EB. EBCare, LLC is a limited liability corporation, formed to establish the Registry and to own the data collected in the Registry. EBCare, LLC is managed by a Board of Managers representing DEBRA International, and DEBRA of America, Inc. One purpose of the Registry is to keep Registry participants informed about research projects and clinical trials. We believe that the broad use of the Registry will increase awareness of potential treatments, support policy initiatives and advocacy and lead to deeper engagement with the EB community of patients, families, qualified researchers and others in the health care community.
If you consent to participate in the Registry, all the personal information you provide will be kept strictly confidential by EBCare, LLC and will be used only with your express authorization and consent or as permitted by applicable law. The Registry is compliant with current privacy and security regulations, e.g., the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Only de-identified data will be made available to qualified researchers who may analyze data in the Registry. Your name will not be connected to information that you provide for the Registry unless you expressly authorize and consent to its disclosure in each case. No information that would make it possible for anyone to identify you will be used in any presentations or written reports that utilize data from the Registry.
We encourage individuals and families affected by all forms of epidermolysis bullosa (EB) to participate in the EBCare Registry. In order to do so, you must read the Registry Information Sheet, which describes important aspects of the Registry, sign an electronic consent and authorize and consent to the use of and disclosure of your health information for purposes of the Registry before registering. Qualified researchers should not register. Instead, they should contact the Registry Coordinator to enquire how to submit a proposal for a research project.