Newborn Screening

CPHI brings deep expertise to state newborn screening programs, partnering with them to develop family-centered decision-making tools, plan the implementation of new disorders, optimize short-term follow-up protocols and materials, and design robust long-term follow-up systems. View our portfolio of newborn screening work below.

Navigating and Understanding the Family's Decision

Development of a shared decision making tool for birth providers and families to use in discussing newborn screening (click here to acess the tool)
Qualitative research on the reasons families decline the newborn screen

New Disorder Implementation

Evaluation of the time needed and factors required for the implementation of new disorders (article)
Development and customization of new disorder implementation planning tools

Timeliness

Partnering with state newborn screening programs to decrease the time to diagnosis and intervention (article)
Supporting NBS programs to track changes in timeliness through visualizations and quality improvement initiatives (see the cystic fibrosis state reports we've developed to support timeliness)

Interoperability

Guiding and facilitating the advancement of interoperability between clinical and newborn screening systems
Identifying strategies and data sources to facilitate data sharing
Developing partnerships between public health professionals, informaticists, and hospitals to develop interoperable solutions

Short-term Follow-up

Development of short-term follow-up data systems
Quality improvement of short-term follow-up systems and communication materials

Long-term Follow-up

Establishing a Minimal Data Set for newborn screening long-term follow-up (article)
Development of the Long-term Follow-up Roadmap, Long-term Follow-up Guide, and associated resources
Guidance on the the development and implementation of newborn screening long-term follow-up programs
Convening newborn screening partners to advise long-term follow-up needs and data systems
Gathering systematic input from families and providers to understand their experiences with newborn screening long-term follow-up and inform long-term follow-up program needs or improvements (article)

Long-term Follow-up Roadmap