NBDPS and BD-STEPS Public Access Procedures

Data from the National Birth Defects Prevention Study (NBDPS) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) are not released to the public. Qualified researchers can be granted access to NBDPS and/or BD-STEPS data for analysis through collaboration with one of the Centers for Birth Defects Research and Prevention (CBDRP). The following information includes how to apply for access to NBDPS and/or 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 explores information from deliveries that occurred between 1997 and 2011. Mothers of more than 30,000 babies with birth defects and 10,000 babies without birth defects took part in this study, and over 350 papers have been written using data from the NBDPS. Enrollment in the study ended in March 2013, but researchers continue to analyze this rich source of information on birth defects.

Learn more about NBDPS

BD-STEPS extends and focuses the efforts of the NBDPS to understand risks and potential causes of birth defects, and also includes research into risks and potential causes of stillbirths.

BD-STEPS began collecting data on deliveries that occurred on or after January 1, 2014. Results from BD-STEPS will provide researchers with a better understanding of factors that might raise or lower the risk of experiencing a stillbirth and/or having a baby with a birth defect.

Learn more about BD-STEPS

Accessing the NBDPS and/or BD-STEPS Data

To access the data for analysis, individuals must meet the appropriate requirements to guarantee the confidentiality of participants and ensure that data are used in accordance with their consented purposes. Interested researchers should follow the protocol detailed in the steps below.

Step 1 – Review list of NBDPS and BD-STEPS publications
- To date, over 350 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. Publication list [PDF – 348 KB]
Step 2 – Identify 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 on the proposal, it will be routed to the Georgia Center at the CDC.
  - Centers for Birth Defects Research and Prevention:
    - Arkansas (NBDPS and/or BD-STEPS analyses)
      Principal Investigator: Wendy Nembhard, PhD, MPH, FACE
      Contact: ar@nbdps.org or ar@bdsteps.org
      Research focus: Genetics, gene-environment interactions, congenital heart defects
    - California (NBDPS and/or BD-STEPS analyses)
      Principal Investigator: Gary Shaw, DrPH
      Contact: ca@nbdps.org or ca@bdsteps.org
      Research focus: Diet, obesity, drugs, alcohol, stress, pollution, job, genetics
    - Georgia (CDC) (NBDPS and/or BD-STEPS analyses)
      Principal Investigator: Elizabeth Ailes, PhD
      Contact: ga@nbdps.org or ga@bdsteps.org
      Research focus: Medication use during pregnancy, fertility treatments, novel statistical methods
    - Iowa (NBDPS and/or BD-STEPS analyses)
      Principal Investigator: Paul Romitti, PhD
      Contact: ia@nbdps.org or ia@bdsteps.org
      Research focus: Smoking, alcohol use, genetics, medications, chemicals and toxins
    - Massachusetts (NBDPS and/or BD-STEPS analyses)
      Principal Investigator: Mahsa Yazdy, PhD
      Contact: ma@nbdps.org or ma@bdsteps.org
      Research focus: Medication use during pregnancy
    - New York (NBDPS and/or BD-STEPS analyses)
      Principal Investigator: Marilyn Browne, PhD
      Contact: ny@nbdps.org or ny@bdsteps.org
      Research focus: Maternal illness and medications, environmental and genetic risk factors
    - North Carolina (NBDPS and/or BD-STEPS analyses)
      Principal Investigators: Andrew Olshan, PhD
      Contact: nc@nbdps.org or nc@bdsteps.org
      Research focus: Genes and environment, diet, obesity and exercise, and work exposures
    - Texas (NBDPS analyses only)
      Principal Investigator: Mimi Le, MPH
      Contact: tx@nbdps.org
      Research focus: Race/ethnicity, genes, diet, occupational and environmental factors
    - Utah (NBDPS analyses only)
      Principal Investigators: Marcia Feldkamp, PhD & Lorenzo Botto, MD
      Contact: ut@nbdps.org
      Research focus: Genetics, maternal infections, congenital heart defects
Step 3 – Complete Collaboration Request Form
- Download Collaboration Request Form [PDF – 168 KB]
Step 4 – Submit form to the identified collaborating 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 criteria:
  - 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