The Brain Health Registry considers the protection of your privacy to be one of our most important responsibilities. The following safeguards have been set up to protect your privacy and the confidentiality of your personal information:
Control of contact information
You can control what information is in your profile. You may change your contact information at any time. Only you can add, change or delete information in your profile. You may also withdraw your consent to be a part of the Brain Health Registry at any time.
When registering online, you will be asked to provide an email address and password. This authenticates your identity and ensures that only you can access or update your Brain Health Registry profile.
The Brain Health Registry follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All data are transmitted, stored and processed in a secure environment.
Adherence to the HIPAA Privacy Rule
No one besides the Brain Health Registry staff will have access to your contact and health information. The Brain Health Registry staff will never share your personal health information with any individual or organization without your explicit permission. Your personal health information includes your name, email address, mailing address, telephone number and date of birth.
Protection against involuntary disclosure of your information
The Brain Health Registry staff holds a Certificate of Confidentiality, which is issued by the National Institutes of Health (NIH) to protect the privacy of research participants. Under the terms of the Certificate of Confidentiality, The Brain Health Registry staff cannot be compelled to disclose information that may identify you, even if ordered by a court subpoena, in any federal, state or local civil, criminal, administrative, legislative or other proceedings. The only circumstance in which the Brain Health Registry would disclose your information without your permission would be to prevent injury or death to yourself or others.
Disclosure of your information by you or others
Please note that a Certificate of Confidentiality does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in the Brain Health Registry. If an insurer, employer, or other person obtains your written consent to receive your personal information, then The Brain Health Registry staff may not use the Certificate of Confidentiality to withhold that information. Finally, the Certificate may not be used to withhold information from the federal government needed for auditing or evaluating federally funded projects or information needed by the U.S. Food & Drug Administration (FDA).