The more we know, the stronger babies will grow!
confidentiality
Participant confidentiality and privacy is very important to us, and we take a variety of steps to maintain the confidentiality of all data that we collect. The IFED-2 Study is being led by researchers in the Intramural Research Program at the National Institute of Environmental Health and Sciences which is part of the National Institutes of Health (NIH). The NIH Institutional Review Board (IRB) reviews our study procedures to ensure that we are collecting, storing, and sharing information in a secure manner.
Only trained study staff will have access to participant contact information. All study materials will be stored in a secure manner, such as in a locked cabinet or password protected computer files. Electronic research records will be maintained on secure servers with limited access and IT security and privacy protections in place. We will store your specimens and data with an identification number instead of your name or other identifying information. Much of the information will eventually be used in publications, but your identity will not be revealed.
We will follow applicable laws and policies to keep your information private to the extent possible. However, we cannot guarantee total privacy. Representatives of the NIH IRB or other government agencies that are involved in keeping research safe may inspect the records and review the data collected for the participants in this study.
To further protect the privacy of study participants, all research carried out in the NIH Intramural Research Program is covered by a Certificate of Confidentiality. This certificate allows the researchers who have access to research records to refuse to disclose identifying information on research participation in any civil, criminal, administrative, legislative, or other proceeding, whether at the federal, state, or local level. The Federal Privacy Act also protects the confidentiality of your NIH research records. However, you should know that the Privacy Act does allow the release of some information from your study record without your permission in specific circumstances, such as if it is requested by Congress.
Although we will do everything we can to minimize the chances of this happening, there is always a possibility of a breach in confidentiality in research studies. If you have any questions about your privacy, please contact the study team at info@IFED2.com or call us at 1-866-948-1129.
