Newborn Screening: Research
Using newborn screening data and dried blood spots for research
Primary investigators may only use data and dried blood spots for research that has been reviewed and approved by the Wisconsin Newborn Screening Program. Research studies must have potential to improve child health and wellbeing.
Qualified principal investigators requesting programmatic data and/or dried blood spots from the Wisconsin Newborn Screening Program must complete the Wisconsin Newborn Screening Research Request. You will be able to save the survey and return later, if necessary. The questions are available for your review. Required questions depend on the type of request.
The blood that remains after all newborn screening testing is complete is the residual dried blood spot. It is standard practice to use residual dried blood spots for verification testing and quality control.
The Wisconsin Newborn Screening Program has a process for qualified investigators requesting programmatic data and dried blood spots for research. The program requires Institutional Review Board (IRB) approval for research using dried blood spots and programmatic data or determination that IRB review is not required.
Research requests are reviewed by the Wisconsin Newborn Screening Program Initial Review Group. This group consists of:
- The Chair of the Wisconsin Newborn Screening Secretary’s Advisory Committee on Newborn Screening
- The Wisconsin Department of Health Services Newborn Screening Medical Director
- The Chair of the Umbrella Committee (if different than the Newborn Screening Medical Director)
- The Newborn Screening Laboratory Director
- A content expert, generally the Chair of the relevant subcommittee (i.e., metabolic disease expert).
Final approval is given by the Department of Health Services Secretary or Designee and the Wisconsin State Laboratory of Hygiene Director.
Once the request is submitted, it will be reviewed by the Newborn Screening Program, and within three weeks a determination will be made on whether the request is complete. The completed request will move to the Initial Review Group (IRG) for consideration, where an additional three weeks are needed.
If you would like your baby’s blood sample(s) to be excluded from research, please call 608-266-8904 and make sure to leave your name and return phone number. The Newborn Screening Program will accommodate your request.
Approved research studies
Find a list of research studies that have been approved by the Wisconsin Newborn Screening Program, under the formal process instituted in 2026:
Description of project: Inborn errors of immunity (IEIs) are a diverse and rapidly expanding group of disorders arising from genetic defects in immune system function. Our research seeks to identify early biological signals associated with IEIs through analysis of residual newborn dried blood spot specimens. By improving the early detection of IEIs, we hope to improve access to targeted therapies and improve outcomes for children with IEIs.
- Principal Investigator: Dr. Jane Churpek.
- Approval date: July 2, 2026
Need help with the research process?
Please contact the Wisconsin Newborn Screening Program, DHSNewbornScreening@dhs.wisconsin.gov.