Newborn screening is one of the most successful public health programs ever undertaken in the United States. For nearly 60 years, newborn screening has been saving and improving the lives of children and their families through the early identification of diseases that cause permanent disability or death if not identified and treated as early as possible. While individual states administer these screening tests at the birth of an infant and determine which recommended conditions to test for, Health Resources and Services Administration, National Institutes of Health, and Centers for Disease Control provide critical support, both financial and technical, at the federal level for these programs. NORD advocates for robust newborn screening programs at both the state and federal level to ensure the continued benefit to infants and their families.
For more information on each state’s newborn screening activities from 2019 please click here for our 5th Edition of NORD’s State of States Report.
Newborn Screening Resources
For Families and Clinicians:
- National Coordinating Center for the Regional Genetics Networks Resource Repository:
- What is it? Explore resources developed by the NCC, the seven regions, NGEFSC, and other national partners. The repository can be organized by intended audience or topic area (sub-categories are listed below). The filter function will allow you to search by resource name, the organization that developed the resource, topic area, or intended audience.
- Baby’s First Test:
- What is it? Provides current educational and family support and services information, materials, and resources about newborn screening at the local, state, and national levels. This resource is dedicated to educating parents, family members, health professionals, industry representatives, and other members of the public about the newborn screening system. The site also provides many ways for people to connect and share their viewpoints and questions about the newborn screening system.
- BFT NBS Month 2020 Awareness Toolkit
- Expecting Health, Navigate Newborn Screening Modules:
- What is it? To help families navigate their child’s health during a critical period of development, Expecting Health created free online educational modules. Families will find answers to the following questions: What is the process of screening? What do newborn screening results mean? What conditions are screened in newborn screening? What should I ask my healthcare provider about newborn screening? What are the state and federal laws around screening?
- Association of Public Health Laboratories, NewSTEPs:
- What is it? The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) is a national newborn screening resource center designed to provide data, technical assistance, and training to newborn screening programs and assist states with quality improvement initiatives. It includes resources and profiles of state and condition-specific screening.
- American Academy of Pediatrics (AAP)
- HRSA, Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children Communication Guide
- What is it? Considerations to guide the communication of abnormal newborn screen results with families.
- HRSA, Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children Stakeholder Education Guide
- What is it? Rubric of stakeholders to consider when building educational resources about newborn screening.
- New York-Mid-Atlantic Regional Genetics Collaborative Diagnostic Guidelines for Confirmation of Screen-Positive Newborn Screening Results
- What is it? Detailed guide for the clinical response of any abnormal screen result by condition.