Privacy Notice

The Women’s 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 and health information 

You can update your contact information at any time by emailing the KWHR, or, you will have the opportunity to update your information when you complete the annual survey.

Electronic security

The Women’s 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. Data is collected via REDCap. REDCap is a secure, web-based platform for building and managing online surveys and databases. It is maintained locally at the University of Kentucky through the Center for Clinical and Translational Science (CCTS) BioMedical Informatics team. REDCap is implemented as a secure web server (HTTPs) behind the UK Medical Center firewall.

Adherence to the HIPAA Privacy Rule 

No one besides the Women’s Health Registry staff will have access to your contact and health information. The Women’s 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 Women’s 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 Women’s 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.

Information is Not Disclosed to Third Parties

Your personal information is not released for advertising or marketing purposes. We will never sell your email address, name, or personal information.

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 Women’s Health Registry.