Transcription
E l i NEnlargingNationaltilNNewbornbScreeningg Backupp Capacitypyby Establishing a Network ofHarmonized NewbornScreening Programs2010 NewbornN bScreeningSiandd GeneticGti TestingT tiSymposiumMay 3–6, 2010OrlandoStanton L. Berberich, PhDState Hygienic Laboratory at the University of Iowa
BackgroundIowa’s experiencepin pprovidingg backupp NBStesting for the state of Louisiana in 2005,after Hurricane Katrina destroyed theLouisianaL i iPublicP bli HealthH lth LLaboratory,btttaughthtus several things.
Learning It can be done Harmonization is required The congressionally ratified EmergencyManagement Assistance Compact (EMAC)provides the essential business and legalframework for one state to assist anotherstate during an emergency by efficientlyresolving two key issues upfront: LIABILITYand REIMBURSEMENT.
BenefitBenefit from our learning: “The“ h Heartlandl d NBSS BackBackk-up TestingianddQuality Assurance Project” Funded by the Heartland Regional Collaborative Patrick Hopkins (MO NBS lab) and I haveworked togethergas coco--PI’s Establish backup Newborn Screeningservices throughoutgthe Heartland Region.g
GoalPutu in placep ace a processp ocess thata reduceseducesRISK when seeking backup newborng in the context of anscreeningEMERGENCY.EMERGENCY
Emergency An “emergency” in the context of NBSincludes more than disaster conditions.An “emergency”emergency in the context of NBS isANYTHING that prevents timelyidentification of and/or/ adequateqinterventions for babies born with any ofthe disorders included in the NBS panel.
Risk How big must an emergency be to justifysending specimens somewhere else fortesting?When does NOT sending specimens causegreater pgpotential for harm than sendinggthem?
FACT: Risk of harm to a newbornincreases as NBS is delayedWhat is the risk if delayed? 12351ddaydaysdaysdaysweekAt what point does the balance tip? When do you decide you must dosomething?
Risk “in sending” is proportional tothe degree of uncertainty.uncertainty(I HOPE this works.)
What if Wh t if you hadWhath d theth opportunity,t it ini a nonnonemergency situation, to VERIFY backup systems,processes and ppprocedures that DEMONSTRATED Reliable and timely testing of your specimens Effective access to the test results Enabled effective STFU on those newborns that hadabnormal screen results Would that change your tipping point?Would that alter when you decide to use backup?
EMACEMAC has two faces (EMAC: Article I)1. “The purpose of this compact is to provide formutual assistance between the states managing ANY EMERGENCY or disaster that isduly declared by the governor .”2. “This compact shall also provide for emergency--related exercises, testing, or other emergencytraining activities , such actions occurringoutside actual declared emergency periods.”
Steps PlPlanningi Harmonization Each state has the responsibility for ensuring allnewborns receive the benefits of newborn screening. All statest t are ffocusedd on ththe same objective;bj tihhowever,there’s more than one way to do the same thing. The autonomy of states leads to diversity. Interstate fully functional backup drills Makes ALL the difference!! Establishes CERTAINTY
Progress IIowa andd MissouriMii havehrun multiplelti l ddrillsill iin bboththdirections Both are readyy for the emergencygy Missouri or Iowa have run a functional drill witheach state in the Heartland (NE next week) The Heartland is ready for the emergency Minnesota has joined the “Network” and has rundrills in both directions with both states. A backbone is forming in the middle of the country
We believe this network can beexpanded to include other state NBSlaboratories and can be coordinatedto meet the backup needs for anystate program.
Acknowledgements IowaLabPatrick HopkinsDarla EikenCarlene CampbellDennis SchmitzMike MassmanLabMarcia ValbrachtMike RamirezJeremy BellValerie Van ZeeSEMADennis HeltonHSEMDJoyce FlinnFrank Klier MissouriMinnesotaLabMark McCannAmy HietalaChris BrueskeCarrie WolfOEPElizabeth TangwallHSEMKim Ketterhagen
Supported in part by a grant from HRSA/Maternaland Child Health Bureau (Genetic ServicesBranch) U22MC03962-04, Heritable DisordersHeartland Collaborative, through the University ofOklahoma Health Sciences Center.Center
Thankyou
El i Nti lN bEnlarging National Newborn Screeninggppy Backup Capacity by Establishing a Network of Harmonized NewbornHarmonized Newborn Screening Programs 2010 N b S i d G ti T ti2010 Newborn Screening and Genetic Testing Symposium May 3-6, 2010 Orlando Stanton L. Berberich, PhD State Hygienic Laboratory at the University of Iowa
