Table 2.

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

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)

^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

* Missing data for one participant