Table 4.

Top Five Newborn Screening Implementation Activities with the Longest Observed Median Time to Complete, Collected from the New Disorders Readiness Tool, as of August 2019.

Longest to Shortest	Pompe (Median Months, n)	MPS I (Median Months, n)	ALD (Median Months, n)	SMA (Median Months, n)
	Develop follow-up staffing protocols/ensure adequate staffing (12.6, n = 13)	Identify screening methodology/assay for 1st tier testing (14.8, n = 15)	Develop/validate assay for 2nd tier testing (19.7, n = 3)	Obtain approval from the state budget authority (10, n = 6)
	Develop/validate assay for 1st tier testing (12.4, n = 12)	Other funding activities * (14.8, n = 4)	Modify laboratory space; install equipment (17.4, n = 8)	Other approval/authority activities (7.8, n = 4)
	Identify/modify general public education materials to be state-specific (12.0, n = 8)	Develop/validate assay for 1st tier testing (12.5, n = 14)	Develop/validate assay for 1st tier testing (12.7, n = 6)	Ensure adequate laboratory space for testing (6.4, n = 12)
	Identify screening methodology/assay for 1st tier testing (11.9, n = 13)	Procure additional laboratory equipment (11.8, n = 13)	Other funding activities (12.7, n = 3)	Develop budget to show cost for screen (6.2, n = 12)
	Identify/modify family education materials to be state-specific (11.6, n = 8)	Identify/modify general public education materials to be state-specific (11.7, n = 9)	Identify medical specialists/treatment center (11.9, n = 13)	Obtain approval from NBS Advisory Committee (5.3, n = 15)

Activities listed in this table are based on the number of newborn screening (NBS) programs that selected “completed” and provided start and end dates. * Other funding activities include activities such as approval for use of specific funds for pilot testing and applying for and/or receiving external funds to cover cost to implement statewide screening.