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Wyoming

Region: 
6 - Mountain States
Blood Spot Retention Time: 
6 months
Storage Conditions: 
Room Temperature
Approximate Annual Births: 
5800
Approximate Annual Ethnic Distribution: 
White 93%
African American 0.9%
Native American 4.6%
Asian/Pacific Islander 1.4%
Newborn Screening Card Information and Image: 

Wisconsin

Region: 
4 - Region 4
Newborn Screening Program URL: 
Blood Spot Retention Time: 
1 year
Storage Conditions: 
4-8°C
Approximate Annual Births: 
67400
Approximate Annual Ethnic Distribution: 
White 85%
African American 10%
Native American 2%
Asian/Pacific Islander 4%
Hispanic 6% (may also be included in categories above)
Requirements for Adding New Test to Panel: 

 Pilot testing occurs after testing is approved by health Secretary.  All specimens tested.  Test can be added or discontinued after 5 years.

Process for NBS Expansion: 

Designated subcommittee of umbrella advisory committee reviews proposed changes and makes recommendation.  If umbrella committee approves, the proposal is sent to the health Secretary for approval.  New conditions are reviewed after five years to determine whether to continue screening.

Requirements for NBS Expansion: 
• Characteristics of the specific disorder, including incidence, morbidity and mortality.
• Availability of effective therapy and potential for successful treatment.
• Characteristics of the test, including sensitivity, specificity, feasibility for mass screening and cost.
• Availability of mechanisms for determining effectiveness of test procedures.
• Characteristics of the screening program, including the ability to collect and analyze specimens reliably and promptly, the ability to report test results quickly and accurately and the existence of adequate follow-up and management programs.
• The expected benefits to children and society in relation to the risks and costs associated with testing for a specific condition.
• In addition to above formal criteria, feasibility to run testing in laboratory based on necessary equipment, staff, etc., also may be a factor.
Informed Consent Requirements for Research: 

 No consent required.

Reporting Requirements for Research: 

 After validation/verification, specimens are analyzed in a semi-blinded fashion.  Normal results are not reported.   Abnormal results are given to a consultant (medical doctor) who informs the primary care provider.

Multi-State Research Policies: 

 University of Wisconsin IRB.

State Contact Information: 
Gary Hoffman
Newborn Screening Laboratory
WI State Laboratory of Hygiene
465 Henry Mall
Madison, WI 53706-1578
Ph: 608-262-4692
Fax: 608-262-5494
 
Follow-up Coordinator:
 
Karen Kennedy-Parker
Newborn Screening Laboratory
WI State Laboratory of Hygiene
465 Henry Mall
Madison, WI 53706-1578
Ph: 608-262-5817
Fax: 608-262-5494
Newborn Screening Card Information and Image: 

State Comments:

Although there have been exceptions (mutation analysis) the use of residual DBS specimens for method development/research etc happens within the first couple of weeks of storage to minimize any potential changes in the analyte being measured.

Date Last Updated: 
December 2011

West Virginia

Region: 
2 - New York-Mid-Atlantic Consortium
Newborn Screening Program URL: 
Blood Spot Retention Time: 
3 months
Approximate Annual Births: 
22100
Approximate Annual Ethnic Distribution: 
White 96%
African American 3.4%
Native American 0.09%
Asian/Pacific Islander 0.8%
Hispanic 1% (may also be included in categories above)
Requirements for Adding New Test to Panel: 

Pilot testing is not required but is conducted for validation. 

Process for NBS Expansion: 

It is up to the Office of Maternal, Child, and Family Health. 

Requirements for NBS Expansion: 

• National guidelines or recommendations. 

Informed Consent Requirements for Research: 

No consent required. 

Reporting Requirements for Research: 

Results returned based on decision of program. 

Multi-State Research Policies: 

Participation would require approval of maternal and child health program. 

State Contact Information: 
Kristel Fijolek, Chemist III, Supervisor
West Virginia DHHR-BPH-OLS
167 11th Ave
South Charleston, WV 25303
Ph: 304-558-3530 x2501
Fax: 304-558-6210

Email: [email protected]

Follow-up Coordinator:

Deborah Templin
Office of Maternal & Child Hea
WV Dept of Health & Human Res
350 Capital St #427
Charleston, WV 25301-3714
Ph: 304-558-5388
Fax: 304-558-7164

Email: [email protected] 

Newborn Screening Card Information and Image: 
Date Last Updated: 
December 2011

Washington

Region: 
7 - Western States
Blood Spot Retention Time: 
21 years
Approximate Annual Births: 
78600
Approximate Annual Ethnic Distribution: 
White 82%
African American 5.5%
Native American 2.7%
Asian/Pacific Islander 10%
Newborn Screening Card Information and Image: 

Virginia

Region: 
2 - New York-Mid-Atlantic Consortium
Newborn Screening Program URL: 
Blood Spot Retention Time: 
6 months; abnormals kept for 10 years
Approximate Annual Births: 
107260
Approximate Annual Ethnic Distribution: 
White 70%
African American 23%
Native American 0.1%
Asian/Pacific Islander 7%
Newborn Screening Card Information and Image: 

Vermont

Region: 
1 - New England
Blood Spot Retention Time: 
Indefinitely
Approximate Annual Births: 
6100
Approximate Annual Ethnic Distribution: 
White 97%
African American 1.3%
Native American 0.3%
Asian/Pacific Islander 3.1%
Hispanic Ethnicity: 1% (may also be included in race categories above)
Requirements for Adding New Test to Panel: 

Previous conditions added to the panel have been piloted elsewhere.

Process for NBS Expansion: 

Change to regulations, after public hearing, is required.  Advisory committee evaluates condition using established criteria.

Requirements for NBS Expansion: 

• Is the condition serious?
• Is safe, effective treatment available?
• Is early, presymptomatic intervention crucial for a satisfactory outcome?
• Does the test have a high degree of sensitivity and specificity?
• Does screening reach the population at risk?
• Does the cost effectiveness of screening compare favorably with competing interventions?
• National guidelines and recommendations

Informed Consent Requirements for Research: 

N/A

Reporting Requirements for Research: 

N/A

Multi-State Research Policies: 

• Would consider participation.
• Factors to consider include small sample size, obtaining informed consent, and staff time and availability

State Contact Information: 

Roger Eaton
NE Regional NBS Program
Univ of Massachusetts Med School
305 South St.
Jamaica Plain, MA 02135
Ph: 617-983-6300
Fax: 617-522-2846
Email: [email protected]

Follow-up Cordinator:

Cindy Ingham, RN, BSN
Vermont Dept of Health
Div of Health Improvement
Newborn Screening Prog
PO Box 70, 108 Cherry St
Burlington, VT 05402
Ph: 802-951-5180
Fax: 802-951-1218
Email: [email protected]

Newborn Screening Card Information and Image: 
Date Last Updated: 
December 2011

Utah

Region: 
6 - Mountain States
Newborn Screening Program URL: 
Blood Spot Retention Time: 
2 years
Storage Conditions: 
room temp for 7 days, then -20°C
Approximate Annual Births: 
50300
Approximate Annual Ethnic Distribution: 
White 95%
African American 0.9%
Native American 1.2%
Asian/Pacific Islander 3.1%
Newborn Screening Card Information and Image: 

Texas

Region: 
6 - Mountain States
Newborn Screening Program URL: 
Blood Spot Retention Time: 
25 years
Approximate Annual Births: 
374100
Approximate Annual Ethnic Distribution: 
White 84%
African American 12%
Native American 0.03%
Asian/Pacific Islander 3.6%
Hispanic Ethnicity: 51% (may also be included in race categories above)
Requirements for Adding New Test to Panel: 

To add a new condition, we have direct statutory authority if it is part of the ACMG (or currently recognized) panel.  If the pilot test is part of implementation process, then no additional authority is required.

Process for NBS Expansion: 

Legislation enacted in 2009 requires establishment of advisory committee to work with the health department regarding future changes to panel.  All appropriations (even appropriations due to increased fees) require legislative approval.

Requirements for NBS Expansion: 

• ACMG recommendations
• 2009 enacted legislation allows health department to refer to 2005 ACMG report or other report that provides more stringent guidelines

Informed Consent Requirements for Research: 

Depends on the purpose & scope of the research as well as who will be doing the research.

Reporting Requirements for Research: 

Cannot report results until testing has been validated.

Multi-State Research Policies: 

Studies would need to approved by the program and potentially would require approval of the Commissioner of Health and the IRB.  Specimens or data that identify the individual cannot be released to external parties (per TX statute).

State Contact Information: 

Susan Tanksley
Dept. of State Health Services
Laboratory Services Section
1100 W 49th St
Austin, TX 78756
Ph: 512-458-7430
Fax: 512-458-7221
Email: [email protected]

Follow-up Coordinator:

David Martinez
Dept. of State Health Services
Newborn Screening Branch
1100 W 49th St
Austin, TX 78756
Ph: 512-458-7111 x 2216
Fax: 512-458-7421
Email: [email protected]

Newborn Screening Card Information and Image: 
Date Last Updated: 
December 2011

Tennessee

Region: 
3 - Southeast
Newborn Screening Program URL: 
Blood Spot Retention Time: 
12 months; confirmed positives indefinitely
Storage Conditions: 
2-8C for those reported as normal; -20C for confirmed positives
Approximate Annual Births: 
82600
Approximate Annual Ethnic Distribution: 
White 76%
African American 21%
Native American 0.3%
Asian/Pacific Islander 2.3%
Hispanic 3% (may also be included in categories above)
Requirements for Adding New Test to Panel: 

Pilot testing not required but conducted usually just as method validation.

Process for NBS Expansion: 

Advisory committee recommends changes.  No regulations required. 

Requirements for NBS Expansion: 

ACMG recommendations

Informed Consent Requirements for Research: 

No consent required for validation studies.

Reporting Requirements for Research: 

Abnormal results reported during method validation. 

Multi-State Research Policies: 
• Would consider participation with necessary funding provided.
• Short staffing a concern.
• The review board process is currently being examined to develop a data sharing policy for exchange with clinical people.
State Contact Information: 
Chris McKeever
Laboratory Services
Tennessee Dept of Health & Env
630 Hart Lane
Nashville, TN 37247-0801
Ph: 615-262-6352
Fax: 615-262-6393
 
Follow-up Coordinator:
 
Mitzi Lamberth
Maternal & Child Hea Div
Cordell Hall Bldg Fl 5
425 N 5th Ave
Nashville, TN 37247-4701
Ph: 615-262-6304
Fax: 615-262-6458
Newborn Screening Card Information and Image: 
Date Last Updated: 
December 2011

South Dakota

Region: 
5 - Heartland
Newborn Screening Program URL: 
Blood Spot Retention Time: 
1 month
Storage Conditions: 
Room Temperature
Approximate Annual Births: 
11000
Approximate Annual Ethnic Distribution: 
White 79.4%
African American 2.1%
Native American 16.0%
Asian/Pacific Islander 1.5%
Hispanic 2% (may also be included in categories above)
Requirements for Adding New Test to Panel: 

 Administrative Rule

Process for NBS Expansion: 

 Administrative Rule

Requirements for NBS Expansion: 

 In the past, national recommendations such as ACMG 

 
Informed Consent Requirements for Research: 

 SD NBS specimen's are not used for any purposes other than newborn screening.

Reporting Requirements for Research: 

 N/A

Multi-State Research Policies: 

 N/A

State Contact Information: 
Stan Berberich
Iowa Newborn Screening Lab
University Hygienic Laboratory
2220 S. Ankeny Blvd.
Ankeny, IA 50023-9093
Ph: 515-725-1630
Fax: 515-725-1650
 
Follow-up Coordinator:
 
Lucy Fossen
South Dakota Dept of Health
600 E. Capitol
Pierre, SD 57501-1700
Ph: 605-773-2944
Fax: 605-773-5683
Newborn Screening Card Information and Image: 
Date Last Updated: 
December 2011