LDNBS Data for Advocate Use

	A	B	C	D	E	F	G	H	I	J	K	L	M	N	O	P	Q	R	S	T	U	V	W	X	Y	Z
1	State	Number of Conditions Screened	RUSP Compliant	RUSP Alignment Law in Place? (With a timeline?)	Second Screen Performed	How Conditions are Added	NBS Advisory Board	NBS Advisory Board Website	Rare Disease Caucus	Rare Disease Advisory/ Advocacy Council	Screening Status for							Known Advocate Activity (Historic or Current)	NBS Fee	Which lab handles NBS for the State	Technology Used for LSD Screening	Length of Bloodspot Retention	Condition Nomination Form	State NBS Website	State NBS Program Email Address	Life Sciences Trade Organization?
2	State	Number of Conditions Screened	RUSP Compliant	RUSP Alignment Law in Place? (With a timeline?)	Second Screen Performed	How Conditions are Added	NBS Advisory Board	NBS Advisory Board Website	Rare Disease Caucus	Rare Disease Advisory/ Advocacy Council	X-ALD	Krabbe	MLD	Pompe & MPS I	MPS I	MPS II	Gaucher/Fabry/NP	Known Advocate Activity (Historic or Current)	NBS Fee	Which lab handles NBS for the State	Technology Used for LSD Screening	Length of Bloodspot Retention	Condition Nomination Form	State NBS Website	State NBS Program Email Address	Life Sciences Trade Organization?

3	Alabama	61	No	Yes	no	Dept. of Health	Yes	(none found)		Yes	Active	Efforts Started		Both	07/29/2024				$150.00	Alabama		3 months	None found	http://www.alabamapublichealth.gov/newbornscreening/	rachael.montgomery@adph.state.al.us
4	Alaska	54	No		no	Dept. of Health	Yes	(none found)		No	Efforts Started							MLD	$190.50	Iowa		3 years	None found	Newborn Bloodspot Screening Program	newborn.screening@alaska.gov
5	Arizona	35	No	Yes	yes	Dept. of Health	Yes	Arizona State Newborn Screening Program		In Progress	Active			Both	5/1/2023				$171.00	Arizona		3 months	None found	ADHS - Newborn Screening - Home	kathryn.fitzpatrick@azdhs.gov
6	Arkansas	34	No	Yes	no	RUSP	Yes	(none found)		In Progress	Active			Both	1/1/2023			Krabbe	$131.00	Arkansas		1 year	None found	Newborn Screening Arkansas Department of Health	patricia.purifoy@arkansas.gov
7	California	80	No	Yes	no	RUSP	No	N/A	Yes	In Progress	Active			Both	8/1/2018	Active			$210.00	California		Indefinitely	None found	Newborn Screening Program	nbs@cdph.ca.gov
8	Colorado	48	No		yes	Legislatively	Yes	Colorado NBS Stakeholders		Yes	Active			Both	6/1/2022				$111.00	Colorado		Six Months	None found	Newborn screening \| Department of Public Health & Environment	cdphe_conbs@state.co.us
9	Connecticut	71	No		no	Legislatively	Yes	(none found)	Yes	Yes	Active			Both	1/1/2021	4/26/2024			$110.00	Connecticut		3 years	None found	The Connecticut Newborn Screening Program	adrienne.manning@ct.gov
10	Delaware	56	No		Yes	Dept. of Health	Yes	(none found)		Yes	Active			Both	1/1/2020	7/1/2024			$135.00	Revvity		90 days	None found	Delaware Newborn Screening Program	denewbornscreening@nemours.org
11	District of Columbia	63	No		no	Mayor/Legislation	Yes	(none found)		No	Active			Both	4/1/2018				$0.00	Revvity		1 year	None found	Newborn Screening \| doh	lindsay.handelsman@dc.gov
12	Florida	57	No	Yes	no	RUSP/Advisory Board	Yes	GNSAC		Yes	Active			Both	1/1/2021	7/29/2024			$15.00	Florida		Six months	None found	Florida Newborn Screening	Emily.Reeves@flhealth.gov
13	Georgia	37	No	Yes	no	Dept. of Health	Yes	NBS Advisory Committee		Yes	Active	Active		Both	9/1/2021			Krabbe	$80.40	Georgia		Four months	NBS Advisory Committee	Newborn Screening (NBS) \| Georgia Department of Public Health	dph-nbs@dph.ga.gov
14	Hawaii	45	No		no	Dept. of Health	Yes	(none found)		No	Active			Both	7/3/2023				$99.00	Washington		One Year	None found	http://health.hawaii.gov/genetics/programs/nbshome/	dana.mulcahy@doh.hawaii.gov
15	Idaho	52	No		yes	Dept. of Health	Yes	(none found)		No	Active			Both	2/1/2022				$120.70	Washington		One Year	None found	About Newborn Screening \| Idaho Department of Health and Welfare	IdahoMCH@dhw.idaho.gov
16	Illinois	57	Yes		no	Dept. of Health	Yes	Genetic and Metabolic Diseases Advisory Committee		Yes	Active	Active	Law Passed	Both	6/1/2015	Active			$128.00	Illinois		2- 6 months	None found	Newborn Screening	DPH.Newbornscreening@illinois.gov
17	Indiana	58	No		no	Dept. of Health OR Legislatively	Yes	(none found)		Yes	Active	Active		Both	7/1/2020				$120.00	Indiana		Six months or three years	GNBS: Nominate a NBS Condition	Health: GNBS: Newborn Screening Program	ISDHNBS@isdh.IN.gov
18	Iowa	56	No	Yes	no	Dept. of Health	Yes	Congenital and Inherited Disorders Advisory Committee		In Progress	Active	Efforts Started		Both	5/15/2023			Krabbe/X-ALD	$162.00	Iowa		Five years	None found	Iowa Newborn Screening Program (INSP)	kimberly.piper@idph.iowa.gov
19	Kansas	35	No		no	Dept. of Health/Advisory Board	Yes	https://nbss.ks.gov/advisory-councils/newborn-screening-advisory-council/		In Progress	Active			Both	1/1/2021	8/1/2024			$0.00	Kansas		Thirty days	None found	Newborn Screening & Surveillance	kdhe.newbornscreening@ks.gov (Zachery.Leeker@ks.gov)
20	Kentucky	59	No		no	RUSP or Legislatively	Yes	(none found)		Yes	Active	Active		Both	2/1/2016	Active			$150.00	Kentucky		2 months	None found	Newborn Screening Program - Cabinet for Health and Family Services	wanda.atha@ky.gov
21	Louisiana	35	No	Act 17 of 2023	no	Dept. of Health OR Legislatively	Yes	Family Health Boards & Commissions		Yes	Pending 2023	Law Passed		Both	1/1/2022			Krabbe	$30.00	Louisiana		1 month	None found	http://dhh.louisiana.gov/index.cfm/page/470	tcrocket@la.gov
22	Maine	56	No		no	Dept. of Health	Yes	Joint Advisory Committee (JAC)		Yes	Active			Both	4/1/2021				$220.00	Massachusetts		Indefinitely	None found	Maine Newborn Bloodspot Screening Program - Division of Disease Prevention	anne.watson@maine.gov
23	Maryland	61	No	Yes	recommended	Dept. of Health	Yes	Office of Genetics Advisory Councils and Committees		Yes	Active	Efforts Started		Both	6/1/2019				$106.00	Maryland		25 years	None found	Maryland Department of Health Newborn Screening	Fizza.Majid@maryland.gov
24	Massachusetts	66	No		no	Dept. of Health	Yes	(none found)		Yes	Pilot			Both	1/1/2018				$171.21	Massachusetts		15 years	In progress	New England Newborn Screening Program	mailto:roger.eaton@umassmed.edu	MassBio
25	Michigan	58	No		no	Dept. of Health/Advisory Board	Yes	Newborn Screening Advisory		In Progress	Active	Efforts Started (see note)		Both	8/1/2017				$135.29	Michigan		Up to 100 years	None found	https://www.michigan.gov/mdhhs/0,5885,7-339-73971_4911_4916-64851--,00.html	NewbornScreening@Michigan.gov
26	Minnesota	61	No		no	Dept. of Health	Yes	Newborn Screening Advisory Committee (NSAC)		Yes	Active	Active	Efforts Started	Both	8/1/2017			Krabbe	$235.00	Minnesota		Indefinitely	Condition Nomination Form	http://www.health.state.mn.us/divs/phl/newborn/	health.newbornscreening@state.mn.us
27	Mississippi	64	No	Yes	no	Dept. of Health	Yes	(none found)		Yes	Active			Both	1/1/2022				$110.00	Revvity		1 year		https://msdh.ms.gov/msdhsite/_static/41,0,101.html	mailto:Philis.hoggatt@msdh.state.ms.us
28	Missouri	77	Yes		no	Dept. of Health	Yes	Missouri Genetic Advisory Committee		Yes	Active	Active		Both	1/1/2013	Active			$116.00	Missouri		5 years		Missouri Newborn Screening	info@health.mo.gov, tracy.klug@health.mo.gov
29	Montana	33	No		no	Dept. of Health	Yes	Newborn Screening Advisory Committee		No	Approved	Efforts Started							$145.00	Montana & Wisconsin		1 year	Nomination Form	https://dphhs.mt.gov/ecfsd/cshs/newbornscreeningprograms/	lbeischel@mt.gov
30	Nebraska	38	No		no	Dept. of Health	Yes	Newborn Screening Links & Resources		No	Active			Both	7/1/2018				$86.00	Revvity		3 months		http://dhhs.ne.gov/Pages/Newborn-Screening.aspx	jillian.chance@nebraska.gov
31	Nevada	58	No		yes	Dept. of Health	Yes	(none found)		Yes	Efforts Started				lositic delay (need new building - antipated 2026)	lositic delay (need new building - antipated 2026)			$81.00	Nevada		Six months - One Year		Nevada State Public Health Laboratory	ogentscheff@med.unr.edu
32	New Hampshire	42	No		no	Dept. of Health	Yes	Newborn Screening Program		Yes	active			Both	1/1/2020				$146.00	Massachusetts		Six months		https://www.dhhs.nh.gov/dphs/bchs/mch/newborn.htm	amanda.merrill@dhhs.state.nh.us
33	New Jersey	63	No		no	Dept. of Health	Yes	NBS Advisory Review Committee		Yes	Active	Active		Both	7/1/2019	logistic delay			$150.00	New Jersey		23 years		Department of Health \| Newborn Screening & Genetic Services	miriam.schachter@doh.nj.gov
34	New Mexico	50	No		yes	Dept. of Health	Yes	(none found)		In Progress	Active	Law Passed		Both	5/1/2021				$240.00	Oregon		18 months		Newborn Genetic Screening	brenda.romero@state.nm.us
35	New York	60	No		no	Dept. of Health OR Legislatively	No	N/A		Yes	Active	Active	Pilot	Both	10/1/2018				$0.00	New York		Up to 27 years		New York State Newborn Screening Program	joseph.orsini@health.ny.gov
36	North Carolina	46	No	Yes	no	Dept. of Health	Yes	(none found)		Yes	Active	Previous Activity		Both	2/13/2023			Krabbe, MLD	$132.00	North Carolina		5 years		N.C. DPH: State Lab > Newborn Screening	kimberly.blake@dhhs.nc.gov	https://www.ncbioscience.net/
37	North Dakota	53	No		no	Dept. of Health	Yes	https://www.hhs.nd.gov/cfs/newborn-screening/newborn-blood-spot-screening/advisory-committee	No	No	Efforts Started				1/1/2024				$109.00	Iowa		Age 18		ND Newborn Screening Program \| Health and Human Services North Dakota	jbmeyer@nd.gov
38	Ohio	48	No	Yes	no	Dept. of Health	Yes	Advisory Council \| Ohio Department of Health		Yes	Active	Active		Both	11/1/2017				$98.63	Ohio	FIA-MS/MS	2 years		Newborn Screening \| Ohio Department of Health	ODHLabs@odh.ohio.gov
39	Oklahoma	58	No	Yes	no	Dept. of Health	Yes	Infant and Childrens Health Advisory Council		In Progress	Active				3/1/2021				$160.42	Oklahoma		up to 42 days		Newborn Screening Program	newbornscreen@health.ok.gov
40	Oregon	45	No	No (see note)	no	Dept. of Health	Yes	Northwest Regional NBS Program Advisory		No	Active	Previous Activity		Both	10/1/2018				$175.00	Oregon		1.5 years		Oregon Health Authority : Northwest Regional Newborn Screening Program	NWRegional.NBS@dhsoha.state.or.us
41	Pennsylvania	63	No	Yes	no	Dept. of Health/Advisory Board	Yes	Newborn Screening Advisory Boards	Yes	Yes	Active	Active	Efforts Started	Both	1/1/2017	Active			$0.00	Revvity		1 year	Dried Blood Spot (DBS)	Newborn Screening Program	jebixler@pa.gov	LifeSciencesPA.org
42	Rhode Island	35	No	Yes	no	Dept. of Health	Yes	(none found)		In Progress	Active			Both	1/1/2018				$162.98	Massachusetts		23 years		Newborn Screening Information	Emily.Eisenstein@health.ri.gov
43	South Carolina	56	No		no	Dept. of Health	Yes	(none found)		Yes	Active	Active		Both	2/1/2021	anticpated go live spring 2025			$127.00	South Carolina		1 year		Newborn Screening \| SCDHEC	spellsty@dhec.sc.gov
44	South Dakota	50	No		no	Dept. of Health	Yes	Newborn Screening Advisory Committee		No	Efforts Started			Pompe					$75.00	Iowa		1 month	Condition Nomination Form	https://doh.sd.gov/family/newborn/metabolic/	bernadette.boes@state.sd.us
45	Tennessee	71	No	Yes (three years)	no	Dept. of Health	Yes	Newborn Screening		Yes	Active	Active	Efforts Started	Both	7/1/2017	Implementation pilot pending contracts			$185.00	Tennessee		1 year		https://www.tn.gov/health/health-program-areas/newborn-screening.html	thomas.childs@tn.gov
46	Texas	57	No	Yes	yes	Dept. of Health	Yes	Newborn Screening Advisory Committee		In Progress	Active								$127.10	Texas		Up to two years		Newborn Screening Program \| Texas DSHS	rachel.lee@dshs.texas.gov
47	Utah	54	No		yes	Dept. of Health	Yes	(none found)		Yes	Active			Both	7/10/2023				$140.00	Utah		Min. 90 days		http://health.utah.gov/newbornscreening/	kimhart@utah.gov
48	Vermont	36	No		no	Dept. of Health	Yes	(none found)		No	Active	See note		Both	5/1/2019				$203.00	Massachusetts		1 year		Vermont Newborn Screening Program	AHS.VDHNewbornScreening@vermont.gov
49	Virginia	35	No	EveryLife focus - 2024	no	Dept. of Health	Yes	Genetics Advisory Committee		Yes	Active	Previous Activity		Both	1/1/2019			Krabbe	$138.00	Virginia		Six Months		Newborn Screening - VDHLiveWell	christen.crews@vdh.virginia.gov
50	Washington	36	No		recommended	Dept. of Health	Yes	Newborn Screening - OTCD		In Progress	Active			Both	10/1/2019				$135.10	Washington		21 years		Newborn Screening \| Washington State Department of Health	nbs.prog@doh.wa.gov
51	West Virginia	39	No		no	Dept. of Health	Yes	(none found)		Yes	Active			Both	3/15/2023	03/01/0203			$186.00	West Virginia		3 months		WV DHHR - OMCFH - Newborn Screening - Home Page	kristel.f.fijolek@wv.gov
52	Wisconsin	49	No	EveryLife focus - 2023	no	Dept. of Health	Yes	Newborn Screening Program: Committee		In Progress	Active	Previous Activity		Pompe				Krabbe	$195.00	Wisconsin		1 year	Nominate a Condition for Addition	Newborn Screening (NBS) \| Wisconsin State Laboratory of Hygiene	mei.baker@wisc.edu
53	Wyoming	56	No		recommended	Dept. of Health/Advisory Board	Yes	(none found)		No	Active			Both	6/1/2024				$97.32	Colorado		Six months		Newborn Screening Education - Wyoming Department of Health	megan.callahan@wyo.gov
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58		Data primarily compiled from state websites, www.babysfirsttest.org, www.rarediseases.org, and data.newsteps.org
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60						State profiles from NewSteps include a great deal of useul information: https://www.newsteps.org/data-center/state-profiles
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