State Profile

State Profile Year: ?

Annual Births in : ?

Name of NBS Program: ?

Region: ?

Website:

Number of required screens:

Responsible Laboratory:

Name:

Type:

Recommended Uniform Screening Panel
Core Conditions (? of 38 conditions listed on the RUSP are Universally Screened)

Every state performs newborn screening for hearing loss, however not all states are mandated to do so. These numbers reflect state mandated screening for early hearing loss.

The core conditions presented are those listed on the Advisory Committee for Heritable Disorders in Newborns and Children Recommended Uniform Screening Panel (RUSP) and are disorders that should be included in every Newborn Screening Program. Current information for each disorder, along with the dates of implementation can be updated by individuals within each state screening program.

Amino Acid Disorders +

Recommended Uniform Screening Panel
Secondary Conditions

The secondary conditions presented are those listed on the Advisory Committee for Heritable Disorders in Newborns and Children Recommended Uniform Screening Panel (RUSP) as disorders that can be detected in the differential diagnosis of a core disorder. Current information for each disorder, along with the dates of implementation can be updated by individuals within each state screening program.

Other conditions screened by states

The conditions presented here are not currently recommended by the Advisory Committee for Heritable Disorders in Newborns and Children Recommended Uniform Screening Panel (RUSP). States have added conditions based on local regulations or statutes, or under pilot studies. Current information for each disorder, along with the dates of implementation can be updated by individuals within each state screening program. If no conditions are listed, this state is not currently screening for any additional disorders beyond the RUSP.

Specimen Collection

Recommended Initial Screening Age: ?

Recommended Second Screening Age: ?

Second Screen Policy: ?

NICU CLSI Guideline Adoption Status: ?

NICU CLSI Guideline Adoption Description: ?

Specimen Transport and Receipt

Courier Service Usage Status: ?

Courier Provider: ?

Definition of Specimen Receipt at Lab: ?

Recording of Specimen Receipt at Lab: ?

Specimen Storage and Retention

Dried Blood Spot Retention Time: ?

Dried Blood Spot Storage Conditions: ?

Data Retention Policy Exists? ?

Data Storage Period for Normal Specimen Data: ?

Data Storage Period for Abnormal Specimen Data: ?

Consent

Consent For Newborn Screening: ?

Opt Out Policy: ?

Opt Out Recording Method: ?

Consent Recording Method: ?

Residual Specimen Uses: ?

Specimens Consented for Research? ?

Specimen Sharing Policies: ?

Follow-Up

Short Term Follow-Up Definition: ?

Short Term Follow-Up Description: ?

Unique Follow-Up Methods: ?

Follow-Up Period for Inconclusive Diagnosis: ?

Long Term Follow-Up activities? ?

Long Term Follow-Up Description: ?

Analysis

Process for Reporting Missed Diagnoses? ?

Missed Diagnosis Reporting Process: ?

Matching NBS Records to find Unscreened Babies? ?

Matching Data System? ?

Result Matching Method: ?

Unsatisfactory Specimen Testing Policy: ?

Operations

Provide Emergency/Disaster Support? ?

Provide Emergency/Disaster Agreement In Place? ?

Provide Emergency/Disaster Plan Written? ?

Provide Emergency/Disaster Plan Testing Frequency? ?

Receive Emergency/Disaster Support Policy? ?

Receive Emergency/Disaster Support Policy Description: ?

Receive Emergency/Disaster Support Agreement In Place? ?

Receive Emergency/Disaster Support Plan Written? ?

Receive Emergency/ Disaster Support Plan Testing Frequency? ?

Continuity of Operations Plan (COOP) Exists? ?

COOP Exercised? ?

Last time COOP was tested?

National Recommendations Followed? ?

National Recommendation Implementation Time Frame: ?

No Formal Time Frame

Pilot Studies Required Before Implementation? ?

Feasibility Study Done? ?

Lab Test Addition Challenges: ?

Lab Test Implementation Period: ?

Lab Test Addition Requirements: ?

POC Test Addition Challenges: ?

POC Test Implementation Period: ?

POC Test Addition Requirements: ?

Funding

Newborn Screening Funding Sources: ?

Fee Collection Method: ?

Fee Holding Location: ?

Fees ?

Initial Screen Fee:

Repeat Screen Fee: Included in initial screen fee

Second Screen Fee:

Fee Use Details ?

Use:

Used?

% Used

Fee Notes: ?

NBS System Organizational Chart: ?

Document:

Link:

Shared Duties: ?

description

Follow-Up on Unsatisfactory Specimens: ?

Responsible Party:

Description:

description

Follow-Up on Borderline Results: ?

Responsible Party:

Description:

description

Laboratory Test Performance Evaluation: ?

Responsible Party:

Description:

description

Formal Communication Structure: ?

Present?

Description:

description

NBS Program Staffing Level: ?

Laboratory Scientists: FTE

STFU Personnel: FTE

Clerical Support Personnel: FTE

EHDI Personnel: FTE

CCHD Personnel: FTE

STFU Responsible Parties: ?

Certification Program: ?

Proficiency Tests: ?

Program Information: ?

Document:

Link:

NBS Educational Information Languages: ?

Lab Operating Hours: ?

Follow-Up Operating Hours: ?

Days of the week each of the following routine laboratory activities occur

	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday	Holiday

Please select the days of the week each of the following routine follow-up activities occur

	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday	Holiday

Please select the days of the week tests are run for each of the following time critical disorders

	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday	Holiday

Please select the days of the week tests are run for each of the following non-time critical disorders

	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday	Holiday

Inclement Weather Work Policy: ?

description

Overall NBS Program: ?

Overall State Laboratory Director: ?

NBS Program Manager: ?

State Laboratory Contact: ?

State Follow-Up Contact: ?

Early Hearing Detection and Intervention Contact: ?

Critical Congenital Heart Disease Contact: ?

HIT NBS Subject Matter Expert Contact: ?

Existing Advisory Committee: ?

Advisory Committee Voluntary: ?

Committee Structure: ?

Document:

Link:

Charge/Bylaws: ?

Document:

Link:

Meeting Frequency: ?

Meeting Minutes Link: ?

Lab Information System: ?

Follow-Up Information System: ?

Staffing Levels: ?

LIMS Management: FTE

Desktop Support: FTE

Network Support: FTE

HL7 Messaging/Terminology Support: FTE

Follow-Up Support: FTE

IT Support Description: ?

description

NBS Data Backup Frequency: ?

Data Loss Amount from Database Failure: ?

Unknown

Data Loss Amount from Instrument Failure: ?

Unknown

IT Infrastructure Recovery Time: ?

Unknown

Disaster Recovery Hardware: ?

IT Part of COOP? ?

Redundant Off-site Operations Exists? ?

Redundant On-site Operations Exists? ?

HL7 Order Messages Accepted? ?

Number of Birthing Centers Submitting HL7 Orders: ?

Number of HL7 Orders Received for Specimen Testing: ?

HL7 Result Messages Sent? ?

Number of Birthing Centers Receiving HL7 Results: ?

Number of HL7 Specimen Results Sent: ?

HL7 Implementation Guides Used: ?

Terminology Standards Used: ?

Web Portal for Sharing Data Related to the NBS Present? ?

Web Portal for DBS Test Orders and Demographic Data Entry Present? ?

Number of Birthing Centers Using DBS Order and Demographic Data Entry Web Portal: ?

Number of Specimens Entered into DBS Order and Demographic Data Entry Web Portal: ?

Web Portal for NBS Results Reporting Present? ?

Number of Birthing Centers Using NBS Results Retrieval Portal: ?

Submitter Performance Feedback Portal Present? ?

Submitters Performance Feedback Portal Description: ?

Alternative Performance Feedback Method Present? ?

Alternative Performance Feedback Method Description: ?

Databases Integrated with NBS Information Systems: ?

How are Hearing Results Integrated with DBS Results? ?

How are CCHD Results Integrated with DBS Results? ?

What is the implementation status of a Statewide HIE? ?

What is the Status of your NBS Program Exchanging Data with the Statewide HIE? ?

HIE Interfacing Funds Received? ?

Who Can Access NBS Results Sent to/through the HIE? ?

How are NBS Results Shared via the HIE Sent to Birthing Facilities/Pediatric Providers? ?

What Other Databases Interface with the HIE? ?