What about your confidentiality?

We know your privacy is important to you, and it’s very important to us too! As a participant in NCANDA, your research records will be kept confidential. This means we do not share information you give us with other family members and we do not share information other family members give us with you. Additionally, we protect your study records so that no one except for approved researchers and staff will have access to any information about you. All study records that identify you (including contact information such as your phone number and email address) will be kept in a locked cabinet in a locked office and only approved study staff will have access to this information. All hard copy data will be stored in a locked cabinet. Any study records entered into a computer system or on electronic media will be assigned code numbers and will not be individually identifiable. Code numbers are a combination of random numbers and letters.

To help us further protect your privacy, NCANDA has obtained a Confidentiality Certificate from the Department of Health and Human Services (DHHS). With this Certificate, the investigators cannot be forced (for example by court subpoena) to disclose research information that may identify you in any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings.

Click here to read the Certificate of Confidentiality and learn more about our commitment to protect your privacy.