EBCare Registry


Consent and HIPAA Authorization for the Release of Health Information and Sensitive Personal Data

I hereby authorize each health care provider who delivers epidermolysis bullosa (“EB”) related health care services to me and each institution in which I receive care (each a “Health Care Provider”) to disclose protected health information and personal data – including sensitive personal data related to EB and EB treatment (collectively, “PHI”) to EBCare, LLC.  Each Health Care Provider may disclose my PHI verbally or in writing.  The purpose of the disclosure is to support my participation in the EBCare Registry.  
I specifically authorize and consent to the collection, processing, use and disclosure of any EB related genetic test results.
I further consent to the use of my PHI by EBCare, LLC and individuals and organizations working on its behalf in connection with the EBCare Registry.
I understand that my PHI may be transferred and stored outside of my home country to countries that may not offer the same level of protection as my home country.
I understand that I may revoke this authorization at any time, except to the extent that a Health Care Provider or the EBCare, LLC has already acted in reliance on it.  My revocation of this authorization will only be effective if I submit it electronically (via email) or in writing to the Health Care Provider. 
I understand that I am not required to grant this authorization.  However, my refusal may prevent my participation in the EBCare Registry. It will not affect my treatment or eligibility for any benefit to which I am otherwise entitled. 
I understand that I may have rights with respect to my PHI, including the right to access my PHI or to correct errors. 
Although it is unlikely, it is possible that information disclosed pursuant to this authorization may be further disclosed to an organization that is not a “covered entity” or an organization required to comply with the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”) or other applicable data privacy laws.  I understand that all recipients of my PHI will take steps to ensure the confidential treatment of my PHI but absolute confidentiality can never be guaranteed.
This authorization has no expiration date.