National Birth Defect Registry

 

Privacy Statement

Birth Defect Research for Children (BDRC) is not a government agency. BDRC is an independent 501 (c) ( 3 ) nonprofit organization funded by public donations and grants. The registry is in a security protected area of our web site. All personal identifying information collected through the registry is confidential. Your name and personal information will never be released without your permission. When you agree to participate in our parent matching project, you give us permission to share your name, contact information and child’s age and condition(s) with other parents who have also agreed to be matched. If we use data from your case for birth defect cluster evaluation, your case will be identified by an ID code only. If we are collaborating with researchers on a study, we will contact you and ask you to sign a “Consent to Participate in Research” form if you wish to participate in the study. Since it is important to be able to get in touch with you for further research, we will contact you periodically by e-mail to update you on the progress of the National Birth Defect Registry. We will also ask for address updates or if you want to add new conditions your child may have been diagnosed with since you first filled out the questionnaire. Please make sure that the address and e-mail information you provide in the questionnaire is complete and accurate, so that we can get in touch with you if a research study is underway involving birth defects like those of your child.

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