How we protect your privacy

What information goes into the Registry?

Basic contact information about you, your child and family will be recorded. A section of the enrollment process has a questionnaire that asks basic demographic information such as your race and ethnicity. In addition, we ask questions about genetic diagnosis and conditions that might affect participation in a study.

How will my information be protected?

Information in the Registry is stored and handled with strict regard for confidentiality in a secure and protected computer database. We at the Registry follow federal, state and university guidelines to safeguard individual rights and privacy. Institutional Review Boards at UW and UNC review all registry procedures annually to make sure we meet requirements that protect the rights of people involved in research.

Who will have access to my information?

Access to information in the Registry is restricted to authorized staff of the Registry at UW and UNC. All records are stored in a secure location with physical, electronic and procedural safeguards. No information is disclosed to outside parties except, as indicated above, when you sign an informed consent form for a research project. The staff of the research projects is also required to keep all information collected about you, your child, and family confidential.

What if I change my mind about being in the Registry?

You can withdraw from the Registry at any time by simply contacting us.