Newborn Screening (NBS) is a public health program that seeks to detect certain genetic, metabolic, and other rare conditions in newborns. Research about NBS and quality improvement (QI) efforts look at the current screening processes and help find ways to improve testing, follow-up, and care for babies and families within the NBS system.
Ongoing research and QI are important to ensure NBS practices are current and relevant to all babies born in the US and their families. Making improvements to NBS is important to improve the accuracy and efficiency of screening tests. Advances can help reduce false positive and false negative screening results.
There are various ways that NBS research and QI are carried out:
- Gathering partner feedback: This method gathers insights to understand different stakeholders experiences with the NBS system to identify areas for improvement.
- Using residual dried bloodspots: Bloodspots collected from newborns during screening may be used to develop better tests, new tests, or understand the impact of health issues in newborns.
- Conducting longitudinal studies: Part of the purpose of these studies is to follow the health outcomes of children identified through NBS over time. Researchers look to make sure that children are developing as expected and they and their families can access support and other services.
There are several opportunities to be involved with NBS research or QI activities. Some people participate in studies or surveys, provide feedback on the NBS program, or become advocates for improving and expanding the NBS system in their communities.
Newborn Screening Research Resources: