Your personal information such as your name, address, or other information that identifies you or your family will be labeled with a code number, encrypted, stored in a secure place and protected with a password. Only authorized investigators will have access to the code and be able to identify you, if needed.Your identifiable information will not be shared with anyone outside the Registry. Approved scientists, researchers, and clinicians, will be given only the de-identified information and may search the de-identified data for patients for their studies. We call this information “de-identified” because all personal identifiers have been removed.
All other information (such as hard copies of records) will be stored in locked files and destroyed in accordance to the standards established by the HIPAA Privacy Act. To review the entire HIPAA Privacy Act, and for information about how it applies to patients, see the Office for Civil Rights website: http://www.hhs.gov/ocr/hipaa.