Methods for Accessing NBDPS and BD-STEPS Data

About the NBDPS and BD-STEPS

The NBDPS is one of the largest U.S. studies that looks at risks and potential causes of birth defects. The NBDPS includes deliveries from 1997 to 2011. Mothers of more than 30,000 babies with birth defects and 10,000 babies without birth defects took part in this study.

BD-STEPS began collecting data on deliveries that occurred on or after January 1, 2014. BD-STEPS extends and focuses the efforts of the NBDPS and includes research into risks and potential causes of stillbirths.

Accessing data

To access the data for analysis, individuals must meet requirements to guarantee the confidentiality of participants. These requirements also ensure data are used in accordance with purposes for which the parents have signed consent. Interested researchers should follow the protocol detailed below.

Step 1: Review existing NBDPS and BD-STEPS publications

To date, over 400 papers have been written and published using data from the NBDPS and/or BD-STEPS. Before applying for data access, please review this list. Proposed analyses that overlap with previously published data will be denied.

Step 2: Identify a center for collaboration

All proposed analysis projects must be sponsored by one of the Centers for Birth Defects Research and Prevention (CBDRP). If a center is not indicated, it will be routed to the Georgia Center at the CDC.

Arkansas (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Wendy Nembhard, PhD, MPH, FACE
• Contact: [email protected] or [email protected]
• Research focus: Genetics, gene-environment interactions, congenital heart defects

California (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Gary Shaw, DrPH
• Contact: [email protected] or [email protected]
• Research focus: Diet, obesity, drugs, alcohol, stress, pollution, job, genetics

Georgia (CDC) (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Elizabeth Ailes, PhD
• Contact: [email protected] or [email protected]
• Research focus: Medication use during pregnancy, fertility treatments, novel statistical methods

Iowa (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Paul Romitti, PhD
• Contact: [email protected] or [email protected]
• Research focus: Smoking, alcohol use, genetics, medications, chemicals and toxin

Massachusetts (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Mahsa Yazdy, PhD
• Contact: [email protected] or [email protected]
• Research focus: Medication use during pregnancy

New York (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Meredith Howley, PhD
• Contact: [email protected] or [email protected]
• Research focus: Maternal illness and medications, environmental and genetic risk factors

North Carolina (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: Andrew Olshan, PhD
• Contact: [email protected] or [email protected]
• Research focus: Genes and environment, diet, obesity and exercise, and work exposures

Texas (NBDPS and/or BD-STEPS analyses)

• Principal Investigator: A.J. Agopian, PhD
• Contact: [email protected]
• Research focus: Race/ethnicity, genes, diet, occupational and environmental factors

Utah (NBDPS analyses only)

• Principal Investigators: Marcia Feldkamp, PhD & Lorenzo Botto, MD
• Contact: [email protected]
• Research focus: Genetics, maternal infections, congenital heart defects

Step 3: Complete the collaboration request form

Download and complete the Collaboration Request Form.

Step 4: Submit the form to the identified center

Collaboration Request Forms should be emailed to the Principal Investigator of the selected collaborating center. Requests are reviewed by the CBDRP Data Sharing Committee based on the following:

• No overlap with an existing NBDPS and/or BD-STEPS research project
• Research project is designed to benefit public health
• No conflicts of interest are identified, including financial, social, or personal, that preclude the objective use of CBDRP data for the consented purposes
• Researcher is qualified to conduct the proposed research, including adequate training and adequate resources to comply with the requirements of the CBDRP Confidentiality and Data Use Acknowledgement

Resources

Study questionnaires

NBDPS Computer Assisted Telephone Interview (CATI) 1997–2005

NBDPS Computer Assisted Telephone Interview (CATI) 2006–2011

BD-STEPS Computer Assisted Telephone Interview (CATI) 2014-2019