Privacy Policy for C.A.R.E. Study

This policy applies to all information collected for the C.A.R.E. Study

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How will my privacy be protected in this study?

Only members of the research team of this study will be aware of your participation in this study. This research team consists of the investigators listed on our consent form, trainees of the listed investigators who have been selected to work on this study, and carefully-trained research assistants.  We use case numbers instead of your names. We will not link your name to any of the information we obtain.  Information linking these case numbers with identifiable information will be kept separate from research records. Identifiable information will be kept in locked and encrypted locations that are only accessible to this study’s research staff. In addition, you and your child’s identities will not be revealed in any description or publications of this research. If you have consented or do consent for you and/or your child to participate in a research study where an investigator is the same as an investigator listed on this protocol, de-identified data from the studies may be joined.

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Will information about me and my child, and our participation, be kept confidential?

Although we will do everything in our power to protect your privacy and the confidentiality of your records, we cannot guarantee the privacy of your research records.  Authorized representatives from the University of California, Los Angeles Research Conduct and Compliance Office may review your data for the purpose of monitoring the conduct of this study.  In addition, authorized representatives of the sponsor of this research study (N.I.M.H.) and the Institutional Review Board of the sponsoring university (UCLA), may review and/or obtain identifiable information related to your participation in this research study for the purposes of monitoring the accuracy and completeness of the research data and for performing required scientific analyses of the research data.

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As is true for all studies funded by the National Institutes of Health (N.I.H.), information about you and your child are also protected by a federal Certificate of Confidentiality.  This means that we can’t be forced to release information about you and your child for any legal proceeding, even if a court of law asks. 

The Certificate allows us to use information about you for purposes of this research, or to disclose it for other research, when allowed by law.  The Certificate requires other researchers to also protect any information we share with them.  

There are limits to this protection.  The Certificate does not protect your information when:

• You or your family voluntarily releases information about yourselves.

• You consent to release of information (for example, the uses described in this form, or if you sign release forms for employment, insurance or medical care).

• The NIH audits or evaluates this NIH-funded research study.

• Authorized representatives from the UCLA Research Conduct and Compliance Office may also review your data for the purpose of monitoring conduct of this study.

• Researchers are required to report possible intent to harm yourself or others and child abuse.

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