The National Birth Defect Registry is a data collection and research project sponsored by Birth Defect Research for Children. The registry collects information about birth defects, learning and attention disorders, childhood cancers and other childhood disabilities.
According to the National Research Council, 3% of all birth defects and developmental disabilities are caused by environmental exposures and another 25% or more may be caused by an interaction between genes and the environment. To assess these associations, the registry asks about the mother's and father's prenatal and pre-conceptual exposures to a variety of factors.
The questionnaire is in a secure section of our web site protected by Verisign. After you complete and submit your questionnaire(s), our staff will download the information into the main registry at our offices and your information will be completely removed from the server.
To participate, please enter your email address in the designated box and type in a password. You will then be able to create a unique profile for each child that may be accessed with this email address and password until your information is downloaded to the main registry.
If you would like to participate in BDRC's parent-matching project, mark yes on the parent matching question. We will send you the names, addresses and phone numbers of other families who have children with disabilities similar to those of your child.
If you have any questions about participating in the registry and parent-matching project, please call Birth Defect Research for Children at (407)895-0802, or email our staff.
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.
© 2002 Birth Defect Research For Children