Confidentiality is taken very seriously by the UAIDPR. Registry participant data is kept in a Microsoft SQL database on a password-protected computer account dedicated to the registry. There are two linked databases, one that contains contact information and the other that contains de-identified descriptive information and history of research participation. Only registry personnel will have access to the data. Original questionnaires and updates, if on paper, will be kept in a locked cabinet for a limited period until data entry accuracy is verified, and then they will be destroyed.
When researchers request registry support for participant recruiting, we follow an approval process (see the “For Researchers” tab for more information). When the request is approved, the Registry Coordinator searches the registry database to locate potential participants for the study. The Registry Coordinator contacts those families and discusses the study’s informed consent form and invites the family for referral to the study. If the family agrees to be referred, the Registry Coordinator gives their contact information to the researcher. Thus, the identities of participants in the registry are given to the researcher only if they agree to be contacted for a study. Information in the registry is only to be used for research study recruitment and is never given to anyone for any other reason.