Nice work, Emory University!
The newly funded consortium will be called the Southeast Integrative Newborn Screening—Long-Term Follow-Up Consortium.
One primary goal is to focus on efforts that ensure NBS specimens are collected efficiently, no more than two days after birth. To achieve that, a secure data exchange infrastructure will be implemented regionally and nationally.
The other main goal is to identify and develop data elements for specific disorders that can be used to make it easier for families to access treatment and information once NBS has identified a condition, and improve long-term outcomes.
The only nationally funded multistate consortium, it includes health departments in Georgia, Florida, Louisiana, and Mississippi, along with partnerships with states in the Southeastern Regional Genetics Group.
https://lnkd.in/gRruMcm8