Stanton L. Berberich, PhDState Hygienic Laboratory at the University of Iowa

Current NBS Emergency Current NBS Emergency Preparedness Activities in the Preparedness Activities in the

Heartland RegionHeartland Region

2010 NCC/RC PD/PM Annual Meeting2010 NCC/RC PD/PM Annual MeetingNovember 18-19, 2010

Gaithersburg, MD

Newborn Screening is Newborn Screening is ImportantImportant• Significant harm will result without Newborn Significant harm will result without Newborn

Screening servicesScreening services

Newborn Screening is Newborn Screening is UrgentUrgent• Short time-delay between interruption of Short time-delay between interruption of

services and resulting harmservices and resulting harm

BackgroundBackground

NBS Laboratory is most vulnerable in NBS Laboratory is most vulnerable in systemsystem• Equipment/Facility expense and complexity Equipment/Facility expense and complexity

prevents rapid relocationprevents rapid relocation• Unique specimen limits back-up optionsUnique specimen limits back-up options

NBS Laboratory is earliest in systemNBS Laboratory is earliest in system• Without testing all benefit from system is lostWithout testing all benefit from system is lost

Resources existResources exist• Surplus (surge) capacity is built-inSurplus (surge) capacity is built-in• EMAC is bridge to interstate resourcesEMAC is bridge to interstate resources

RationaleRationale

Differences in State DirectivesDifferences in State Directives• Disorders (Methods)Disorders (Methods)

Differences in Program PoliciesDifferences in Program Policies• Transfusion, Early Collection, PQTransfusion, Early Collection, PQ

Information Management CapaInformation Management Capabilitybility• Database Structure (multi-state?)Database Structure (multi-state?)• Mapping, Harmonization, TranslatingMapping, Harmonization, Translating• Reporting MethodsReporting Methods• Interface to Follow-upInterface to Follow-up

Interstate AgreementsInterstate Agreements

ChallengesChallenges

Establish verified NBS laboratory Establish verified NBS laboratory services for all State Newborn services for all State Newborn Screening Programs in the Screening Programs in the HeartlandHeartland

GoalGoal

Face-to-Face MeetingFace-to-Face Meeting Conference Calls Conference Calls

• Intra-StateIntra-State• Inter-StateInter-State

Fully Functional DrillFully Functional Drill After-Action AssessmentAfter-Action Assessment Improvement Improvement

StrategyStrategy

AgendaAgenda• IntroductionsIntroductions• Define needDefine need• Discuss objectivesDiscuss objectives• Establish goalEstablish goal• Necessity of functional DrillNecessity of functional Drill• Role of EMACRole of EMAC• Resolve policy differencesResolve policy differences• Harmonization of “Form” dataHarmonization of “Form” data• Harmonization of “Reporting” dataHarmonization of “Reporting” data• Interface lab to follow-upInterface lab to follow-up

Face-to-Face MeetingFace-to-Face Meeting

OutcomesOutcomes• Recognition of value and establish buy-inRecognition of value and establish buy-in• Strengthened relationshipsStrengthened relationships

Within statesWithin states Between statesBetween states

• Harmonization DocumentHarmonization Document• List of ContactsList of Contacts• Establish future teleconferences to plan drillEstablish future teleconferences to plan drill

NBS labNBS lab NBS programNBS program EMACEMAC

Face-to-Face MeetingFace-to-Face Meeting

OutcomesOutcomes• Emergency systems establishedEmergency systems established

LaboratoryLaboratory DepartmentDepartment State [EMAC]State [EMAC]

• Interface State-to-State establishedInterface State-to-State established EMAC to EMACEMAC to EMAC

• Harmonization CompletedHarmonization Completed• Plans for Functional Drill FinalizedPlans for Functional Drill Finalized• Drill date setDrill date set

TeleconferencesTeleconferences

Emergency RecognizedEmergency Recognized Req-A Activated through EMACReq-A Activated through EMAC Specimens sent to Back-up LabSpecimens sent to Back-up Lab

• Chain-of-CustodyChain-of-Custody Specimens received by Back-up LabSpecimens received by Back-up Lab

• Processed, tested and reported according to Processed, tested and reported according to harmonization planharmonization plan

Specimens returned to Requesting LabSpecimens returned to Requesting Lab• Chain-of-CustodyChain-of-Custody

After-Action AssessmentAfter-Action Assessment

Fully Functional DrillFully Functional Drill

ProgressProgress Iowa and Missouri have run multiple NBS back-up Iowa and Missouri have run multiple NBS back-up

drills in both directionsdrills in both directions• Systems are validatedSystems are validated• Both are ready for the emergencyBoth are ready for the emergency

Missouri or Iowa have completed NBS back-up drills Missouri or Iowa have completed NBS back-up drills with each state in the Heartlandwith each state in the Heartland• The Heartland is ready for the emergencyThe Heartland is ready for the emergency

Minnesota has joined the “Network” and has run Minnesota has joined the “Network” and has run drills in both directions with both IA and MO. drills in both directions with both IA and MO. • A backbone is forming in the middle of the countryA backbone is forming in the middle of the country

  

We believe this network can be We believe this network can be expanded to include other state NBS expanded to include other state NBS laboratories and can be coordinated laboratories and can be coordinated to meet the backup needs for any to meet the backup needs for any state program.state program.

AcknowledgementsAcknowledgements

Supported in part by a grant from HRSA/Maternal and Child Health Bureau (Genetic Services Branch) U22MC03962-04, Heritable Disorders Heartland Collaborative, through the University of Oklahoma Health Sciences Center.