Frequently Asked Questions about the National Birth Defect Registry
Is the registry sponsored by the government? No, the registry is sponsored by Birth Defect Research for Children, a 501 (c) (3) nonprofit supported by public donations and grants.
Is the information I submit to the registry confidential? Yes, the registry questionnaire is in a secure area of our server and is downloaded off the internet into our main registry when you complete and submit your questionnaire. No personal identifying information is provided to anyone without your permission.
What if I don’t know all the answers to questions in the registry questionnaire? You have the option to leave the questionnaire online for up to two weeks so you can add answers later. We know that you may not have the answer to every question. Just provide as much information as you can.
If I submitted the questionnaire, can I add information? Once the questionnaire has been submitted, it is taken off the internet, so to add information you will need to contact us at firstname.lastname@example.org and we will manually add the information.
What is done with registry data? Registry data is evaluated to find clusters of birth defects that may be associated with similar prenatal factors and exposures. Data reviews on certain exposures have been presented to the National Academy of Sciences; the Veterans’ Administration; the Environmental Protection Agency; congressional committees; the National Institute of Occupational Safety and Health; the National Institute of Environmental Health Sciences; Vietnam Veterans of America and in national media forums. Registry data have also been used for community advocacy in cases of toxic exposures linked to birth defect clusters.
Are registry data used for studies? Data from the registry are being used by the University of Texas, SW for a study of birth defects in the children of Gulf War veterans. A new project will also make case data available to other researchers studying different birth defects. We will always ask your permission before we put a researcher in touch with you, so please update us with address and/or email changes.
Is the registry endorsed by the scientific community? The National Birth Defect Registry was designed and endorsed through a collaboration of seven prominent scientists working in fields related to obstetrics, epidemiology, biochemistry, genetics and other disciplines related to birth defects and toxic exposures.
If I choose use the registry’s parent matching service, how much personal information is shared with my matching families? The matching information includes the parents’ name, address, phone number, email, child’s age, sex and matching conditions.
Can I stop parent matching if I signed up for this service when I filled out the questionnaire? Yes, just email email@example.com and we will remove your name from the parent matching list.