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UpdateontheSDYCaseRegistry HeatherMacLeod,MSCGC
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WhatistheSuddenDeathintheYoung(SDY)CaseRegistry?
TheSDYCaseRegistrycompilesandstoresinforma9onaboutsuddeninfantandchilddeathstohelp:• Countthenumberandtypesofsuddendeathsuptoage20*
• Understandthecausesandriskfactors• Informwaystopreventthesedeaths*dependsonstateCDRlegislaKon
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SDYCaseRegistryGoals
Establish the incidence of sudden death in the young in the United States
Investigate causes and risk factors for sudden death in the young
Surveillance
Research
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SDYCaseRegistry
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SDYCaseRegistry
Par$cipa$ngstatesinclude:• California(SanFrancisco)• Delaware• Georgia• Minnesota• NewHampshire• NewJersey• Nevada• Tennessee• Virginia(TidewaterRegion)• Wisconsin(selected
jurisdicKons)
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SDYCaseRegistryProcess
Data and
DNA Samples
used for
research on
causes of SDY
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SurveillanceUpdate
• SurveillancestartedJanuary2015– 1520SDYCasesIdenKfied– 1160CasesCleaned
• Nextsteps:usecategorizaKondatatodetermineincidence
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ResearchUpdate
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Samples
=
-20°Cor-80°C
cryovial
Heart
Liver
Spleen
EDTABlood
SuccessfulDNAExtracKonfor
99%ofsamples
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NHLBI-FundedSDYResearchers
Channelopathies and cardiomyopathies among sudden deaths in the young
Alfred George and Elizabeth McNally
Role of genetic variants in sudden death in the young
Prince Kannankeril
Integrating genomic and clinical approaches to sudden death in the young
Martin Tristani-Firouzi and Mark Yandell
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ConsentandResearchGeneKcTesKng
150SamplesatBiorepositoryConsented
146ConsentedforResearch
GeneKcTesKng
113SamplesSentforGenome
Sequencing
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LookingAhead
2014-2018 2019-2023
• RegistryfundedforanaddiKonal5yearcycle
• Increasenumberofstates/jurisdicKons
• Increaseresourcesforconsent/biospecimenacKviKes
Wearehere
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HowCanIBeInvolved?
• EncourageyourforensicpathologiststousetheSDYCaseRegistrytoolsandsavebiospecimensforDNAbankingand/orfuturegeneKctesKng
• FreezebloodinplasKcK2EDTAvacutainersand/orfreezefreshKssue
• EncourageyourCDRteamtousetheSDYCaseRegistryVariablestheCaseReporKngSystem–theyareaccessibletoallteams:www.ncfrp.org
• Ifyouareinafundedstate/jurisdicKoncontactyourpublichealthofficeandofferyourselfasaresource
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Resources
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Rememberifyoucannottest,alempttobankDNA
• GeneTests:– hlps://www.genetests.org
• SearchDNABanking
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SDYCaseRegistryDataCoordinaKngCenterWebsite
Website:www.SDYRegistry.org
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GeneKcCounselors
www.nsgc.org/[email protected]
• InformaKonSheetforFamilies• TemplateforSampleReleasefromME/Coffices• LelerofMedicalNecessityforInsurance
findageneKccounselor.com
"Knight,LauraD"<[email protected]>
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CONTACTINFORMATION:
Website: labs.feinberg.northwestern.edu/websterPhone: 312-227-2525Email: [email protected]
ApotenKalresearchopKonforpaKentsandfamilieswhohavesurvivedasuddencardiaceventatayoungage.InformaKonbelowtocontacttheWebsterlabtolearnmoreabouteligibilitycriteriaandhearmoreaboutthestudy.
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Acknowledgements:SDYCaseRegistry
CentersforDiseaseControlandPrevenKon(CDC)CarrieShapiro-Mendoza,CarriColengim,AlexaErckLambert,SharynParks,ChrisKne
Olson,RosemarieKobau,NiuTian,andDaveThurman
NaKonalCenterforFatalityReviewandPrevenKonHeatherDykstra,EstherShaw,MeghanFaulkner,LindaPoler,ErikBuczkowskiandAbby
Collier
NaKonalInsKtutesofHealth(NIH)JonathanKaltman,KrisKnBurns,andVickyWhilemore
MPHIDataCoordinaKngCenterandUniversityofMichiganBiorepository
MeghanFaulkner,HeatherMacLeod,MarkRussell,AlissaNovak,HeatherDykstra,andEstherShaw
SDYRegistryGranteesMinnesota,Nevada,NewJersey,NewHampshire,Wisconsin,Delaware,Georgia,
Tennessee,SanFranciscoCountyinCalifornia,TidewaterRegionofVirginia
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Acknowledgements:SDYCaseRegistry
SDYAdvisoryCommi@ee:LisaBateman,RobertCampbell,SumeetChugh,LauraCrandall,SamGulino,GardinerLapham,MarthaLopez-Anderson,KurtNolte,DavidThurmanandVickiVeler
SDYAutopsyProtocolCommi@ee:KarenChancellor,BeauClark,TimCorden,KimFallon,CorinneFligner,SamGulino,WendyGunther,JenniferHammers,OwenMiddletonandMichael
Murphy
SDYEthicists:AmyMcGuireandSoniaSuter