Update on the SDY Case Registry - Citizen CPR...Acknowledgements: SDY Case Registry SDY Advisory...

UpdateontheSDYCaseRegistry HeatherMacLeod,MSCGC

WhatistheSuddenDeathintheYoung(SDY)CaseRegistry?

TheSDYCaseRegistrycompilesandstoresinforma9onaboutsuddeninfantandchilddeathstohelp:•  Countthenumberandtypesofsuddendeathsuptoage20*

•  Understandthecausesandriskfactors•  Informwaystopreventthesedeaths*dependsonstateCDRlegislaKon

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

SDYCaseRegistry

SDYCaseRegistry

Par$cipa$ngstatesinclude:•  California(SanFrancisco)•  Delaware•  Georgia•  Minnesota•  NewHampshire•  NewJersey•  Nevada•  Tennessee•  Virginia(TidewaterRegion)•  Wisconsin(selected

jurisdicKons)

SDYCaseRegistryProcess

Data and

DNA Samples

used for

research on

causes of SDY

SurveillanceUpdate

•  SurveillancestartedJanuary2015– 1520SDYCasesIdenKfied– 1160CasesCleaned

•  Nextsteps:usecategorizaKondatatodetermineincidence

ResearchUpdate

Samples

=

-20°Cor-80°C

cryovial

Heart

Liver

Spleen

EDTABlood

SuccessfulDNAExtracKonfor

99%ofsamples

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

ConsentandResearchGeneKcTesKng

150SamplesatBiorepositoryConsented

146ConsentedforResearch

GeneKcTesKng

113SamplesSentforGenome

Sequencing

LookingAhead

2014-2018 2019-2023

•  RegistryfundedforanaddiKonal5yearcycle

•  Increasenumberofstates/jurisdicKons

•  Increaseresourcesforconsent/biospecimenacKviKes

Wearehere

HowCanIBeInvolved?

•  EncourageyourforensicpathologiststousetheSDYCaseRegistrytoolsandsavebiospecimensforDNAbankingand/orfuturegeneKctesKng

•  FreezebloodinplasKcK2EDTAvacutainersand/orfreezefreshKssue

•  EncourageyourCDRteamtousetheSDYCaseRegistryVariablestheCaseReporKngSystem–theyareaccessibletoallteams:www.ncfrp.org

•  Ifyouareinafundedstate/jurisdicKoncontactyourpublichealthofficeandofferyourselfasaresource

Resources

Rememberifyoucannottest,alempttobankDNA

•  GeneTests:– hlps://www.genetests.org

•  SearchDNABanking

SDYCaseRegistryDataCoordinaKngCenterWebsite

Website:www.SDYRegistry.org

GeneKcCounselors

www.nsgc.org/postmortempostmortem@nsgc.org

• InformaKonSheetforFamilies• TemplateforSampleReleasefromME/Coffices• LelerofMedicalNecessityforInsurance

findageneKccounselor.com

"Knight,LauraD"<LDKnight@washoecounty.us>

CONTACTINFORMATION:

Website: labs.feinberg.northwestern.edu/websterPhone: 312-227-2525Email: gregory.webster@northwestern.edu

ApotenKalresearchopKonforpaKentsandfamilieswhohavesurvivedasuddencardiaceventatayoungage.InformaKonbelowtocontacttheWebsterlabtolearnmoreabouteligibilitycriteriaandhearmoreaboutthestudy.

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

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

QuesKons?HeatherMacLeodhmacleodgc@gmail.com630-432-9918