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1、CCHDScreening:AnOverviewforMovingForwardGerardR.Martin,MDElizabethA.Bradshaw,MSN,RN,CPNTheHeartlandGeneticsandNewbornScreeningCollaborativeMay14,20121Objectives•DescribecurrentstateofnewbornandCCHDscreeningwithintheHeartlandGeneticsandNewbornScreeningCollaborative•IdentifyN
2、eedforandSignificanceofCCHDScreening•Describenationalefforts,endorsementsandrecommendationssurroundingCCHDscreening•Identifyresourcesforimplementationandeducationofprovidersandparents•Describerecommendationsformovingforwardwithlegislativeandimplementationefforts2TheHeartlan
3、dCollaborative•Missionistoensurethebestpossibleoutcomeforindividualswithheritabledisordersandoptimizingthehealthofthepopulationthroughoutthelifecyclebyimprovingunderstandingandawarenessofgenetics;expandingaccesstohealthcare;andtranslatingnewfindingstoimprovethequalityofcare
4、withinaneight-stateregion•Arkansas,Iowa,Kansas,Missouri,Nebraska,NorthDakota,Oklahoma,SouthDakota•Approximately290,500birthseachyearin410birthingfacilities•Approximately850homebirthseachyear•NoStatewithUniversalCCHDScreening3TheHeartlandCollaborative:CurrentStatusofCCHDScre
5、ening1HospitalreporttheyarescreeningallbabiesforCCHDOklahomaBirthingHospitalsandarefollowingAAPGuidelines9NICUs16LevelII/SpecialCareUnits23HospitalsreporttheyarescreeningforCCHDbutarenotfollowingAAPGuidelines36HospitalsreporttheyarenotscreeningforCCHD60BirthingHospitalsinOk
6、lahoma4TheHeartlandCollaborative:CurrentStatusofCCHDScreening•Missouri(36/72):Yes52%No48%•Arkansas(24/46):Yes25%No75%•NorthDakota,Iowa,Kansas,Nebraska(132/236)Yes30%No/NoResponse70%•JohnsonHospitalinND->5years5TheHeartlandCollaborativeCharacteristicsofHospitalsConductingScr
7、eening(n=33fromND,IA,KS,NE)*PreliminaryAnalysis;No-ResponseNotIncludedBelow•ProtocolsvaryamongHHS,Hospital-Specific•InfantsScreened:AsymptomaticWell-Babies(64%)andNICU(18%)•TimingofScreeningVaries:0-12(6%),13-24(3%),25-48(67%)•“Screeners”areRNs(75%)orNurseExtenders(6%)•Deli
8、very:Screeninginconjunctionw/dailyweights,metabolic/hearingscreen,TCB(30%)•Outcome
