Birth Defect Research for Children 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 Verisign 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. 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 quarterly 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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