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Your Privacy Is Important to Us

A man in a wheelchair looking at information on a tablet

As part of the study, we ask you to share information that can identify you, like your name, address, and social security number (optional), and health information. Our team values the important information you share with us, and will protect this information with the highest privacy standards.

To protect your information, we: 

  • Follow federal privacy rules, including the Privacy Act and the Common Rule.
  • Maintain tight security controls. Our information systems, including MyConnect, are watched closely by security experts.
  • Remove information that can identify you, including your name, date of birth, and social security number (if you shared it), from your survey answers and samples before we share them with researchers. This information is replaced with a unique number (a code) to protect your identity.
  • Limit and keep track of who can access the information and samples you share. Only approved researchers who agree to our privacy rules will be allowed to use study information and samples for valid scientific reasons.
  • Maintain our Certificates of Confidentiality from the United States government. This will help protect against any legal requests (such as a court order) to give out information that could identify you.

If you have questions about our privacy safeguards, please contact us.