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Newborn screening (NBS) improves long-term outcomes by establishing minimal long-term follow-up (LTFU) data elements. This standardized approach tracks infant survival, specialist contact, and appropriate care post-diagnosis.

Keywords:
equitylong-term follow-up datanewborn screeningpublic health

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Area of Science:

  • Public Health
  • Genetics
  • Pediatrics

Background:

  • Newborn screening (NBS) is a successful public health initiative.
  • Limited data exists on long-term outcomes for infants with positive NBS results.
  • Challenges include consistent, reliable, and low-effort long-term follow-up (LTFU) data collection.

Purpose of the Study:

  • To develop and test a core set of minimal LTFU data elements for NBS programs.
  • To establish a standardized method for gathering essential long-term outcome data.
  • To assess the feasibility and utility of these data elements across diverse programs.

Main Methods:

  • Six NBS programs collaborated to define minimal LTFU data elements.
  • An iterative data collection process and tool development were employed.
  • Data included infant survival, specialist contact, and diagnosis-specific care within one year.

Main Results:

  • In 2022, 83.8% of infants with NBS diagnoses were alive and within the jurisdiction.
  • Of those alive, 92.0% had contact with a specialist.
  • 87.7% received appropriate care specific to their diagnosis.

Conclusions:

  • A core set of minimal LTFU data elements was successfully established.
  • These elements provide a foundation for evaluating the impact of early NBS diagnosis.
  • The approach is applicable across different jurisdictions and NBS programs.