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Table 2 Ranking the most important challenge to address to modernize NBS (n = 41)*

From: Preparing newborn screening for the future: a collaborative stakeholder engagement exploring challenges and opportunities to modernizing the newborn screening system

Challenges identified in literature

Median ranking score (range) a

Critical data will be missing

2 (1–9)

There will be implementation burden for state NBS laboratories

3 (1–8)

State-level implementation will take considerable time

4 (1–7)

There will be RUSP review burden

5 (1–9)

Yet-to-be determined disorder heterogeneity will complicate clinical decision making

5 (1–9)

Major expansion of state bioinformatics capabilities will be needed

6 (2–9)

Accessible state follow-up programs will need to be developed and implemented

6 (1–8)

There will be uncertainties about long-term benefits and risks of transformative therapies

7 (1–9)

Educational materials and resources will need to be developed

9 (1–9)

  1. a Instructions were to rank the challenges (from 1 to 9) in order of importance to allow rapid implementation of NBS for 30 conditions, where 1 = most important
  2. * Missing data for one participant