Research Data Project

Birth Defect Research for Children is starting a new initiative to connect scientists studying birth defects with cases of specific birth defects in the National Birth Defect Registry.

The “Research Data Project” will offer access to registry cases to researchers who have an approved IRB (Institutional Review Board) for their study. We also have a scientific board who will review the past work of the inquiring researcher before approving a case request. If a request is approved, we will contact the families of children with the study birth defects to get their permission to be contacted by the researcher.

The Research Data Project has several levels of participation that are fee based. The fees provide ongoing support to expand data collection through the National Birth Defect Registry.

Levels of Participation:

1. Access to coded information from the registry on all cases in a specific category cases. No identifiers provided.
2. Access to parents’ names and contact information for certain birth defect categories. Non-exclusive agreement. All background data from registry provided.
3. Access to parents’ names and contact information for certain birth defect categories. Exclusive agreement. All background data from registry provided. (Exclusive agreement null if no study with the data is published within 5 years.)
4. Organization acts as liaison for study, contacting parents, doing outreach for additional cases, getting consent forms signed, collecting medical records and providing all data to researcher in an exclusive agreement. (Exclusive agreement null if no study with the data is published within 5 years.)

All levels with parent contact should be for a study with an approved IRB and parent consent form.

Please contact betty@birthdefects.org for fee schedule.