biobanking in finland · • digital pathology (coordinated by northern finland biobank borealis)...
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Biobanking in Finland
Anu Jalanko
28.11.2016
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Major Health reform in Finland
Thegovernmenthaspublisheddra4billsonhealth,socialservicesandregionalgovernmentreform
Oneofthelargesteveradministra9veandopera9veoverhaulsinFinlandThegovernmentwantsacustomer- orientedfreedomofchoicemodelMunipalici9eswillhavekeyresponsibili9es
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Change of Legal Framework Secondary Use of Health and Welfare Data
Reform of the National Health Register Legislation Targeted outcomes: The Act considering national health and welfare registries is modernised The use of Centralised Patient Document Archive for research purposes is permitted
Enable the use of data for ”secondary purposes” in a broad sense (incl. ”service management” and ”industrial” purposes)
”Service Operator” - one-stop shop model.
National Genome Strategy FinlandwillestablishaGenomeCenterwiththefollowingresponsibili9es:• Developana9onalreferencedatabaseofgenomesandadatabaseof
genomevariants• Serveasasinglepointofcontactforresearch,contractualand
commercialisa9onservices• Evaluateatthena9onallelvelthevalidityandu9lityofgene9ctests• Promoteethicalprac9cesintheuseofgenomedata• Promotenetworkingandcollabora9onbetweenvariousactorsofthe
sector• Ini9ateands9mulatepublicdebateontheu9liza9onofgenomedata• FacilitateFinland’spar9cipa9onininterna9onalcollabora9veprojects
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Genome Center and Biobanks
TheGenomeCenterhasnotyetbeendefined
GovernmenthasallocatednewfundsfortheestablishmentoftheGenomeCentertobeoperatedinclosecollabora9onwithbiobanks
Legalframeworkforgenomestrategyisplannedtobereadyearliestinfall2017
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The Finnish Biobank Concept TheFinnishbiobanklegistla9onof2013isunique
§ Registra)onofbiobanks,wideconsentandprotec)onofpar)cipants
§ Transferofexis)ngsampleanddatacollec)onstobiobanks§ Possibilitytorecontact§ Collabora)onwithindustry
Possibilitytocollectsamplesanddatafromthehealthcare§ Linkbiobanksampleswithhospitaldata(EMR)§ Linkbiobanksampleswithdatafromna)onalregistries
§ Twona)onwidebiobanks§ Sixclinicalbiobanksbetweenuniversi)es&hospitaldistricts
8 Registered Biobanks in Finland
Transfer of existing collections to registered Biobanks
Exis9ngsample&datacollec9onscanbetransfererredtobiobankbyanopt-outprocedure!Alsodiagnos9csamples!NewsamplescollectedbyawideconsentBiobankmustgivedatatopar9cipantswhenrequired
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Sample Resources in Registered Biobanks
Sampletype/analyses
Sept2016 Dec2016(es)mate)
FFPE 2100000* 3000000Plasma/Serum 148000 148000DNA 95155 111000Biomarkeranalyses 146500 146500GWAS 50000 50000WGS/WES 19950 30000Metabolomics 13200 13200
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*Numberofstudypar9cipants
BBMRI.fi = National coordination and collaboration of biobanks
• Transparent access procedures across all 8 biobanks; sharing all registration documents, nationwide harmonization of broad biobank consent
• Plans towards operating as a one-stop shop (as requested by the Ministry of Social Affairs and Health)
• Examples of national collaboration:
• IT Collaboration – databases & harmonization & BBMRI-ERIC (Coordinated by THL)
• Digital pathology (coordinated by Northern Finland Biobank Borealis)
• Breast Cancer biobanking (coordinated by Helsinki Biobank)
• Hospital quality registers (Coordinated by Auria Biobank)
• National PR collaboration (coordinated by THL Biobank)
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Largepopula9oncohorts
Majorfocusingenomics
Currentlysamplesanddatafrom108000studypar9cipants
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Esityksen nimi / Tekijä
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0
20000
40000
60000
2009 2010 2011 2012 2013 2014 2015
Noofaliq
uots
Year
NumberofDNAaliquotssentforanalysisSerum&plasmafrom106000
DNAfrom81000
iPSreadycellsfrom3000
THL Biobank for Health Research
THL Biobank – CRC Samples
Biobankedcohorts:Serum:1130CRCcasesPlasma:330CRCcasesDNA:330CRCcasesCells,Stool,Urine:selectedcases
-Follow-updatafromna9onalregistries --Biochemicaldata,genomedata,metabolomicdata
OtherTHLcohorts:
FinnishMaternityCohort(FMC):Serumfrom800CRCcases
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New collections 2016-2018 – all with DNA
SUPER–Gene9csofpsycho9cillnesses-10000casesSalWeGeneRisk–gene9criskfactors-15000FinHealth2017-THLpopula9oncohort–7000
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THLBiobank• Transferofexis9ngvaluablecollec9onstobiobank2017-2018• Upto90000studypar9cipants–allwithDNA
Totalnumberupto200000par)cipantswithDNAby2018
ICD-10I25
ICD-10G20
FiguresfromAuriaBiobank
Hospital biobanks with associated EHRs provide tools for ”Digital Phenotyping”
Hospital Biobanks – Current resources
FFPEsamplesfrom2100000individualsClinicaldataofelectronichospitalrecords
ColonCaasanexample:AuriaBiobank:FFPEsamples&clinicaldatafrom2200HelsinkiBiobank:FFPEsamples&clinicaldatafrom4000-Similarinfrastructureforretrievalofclinicaldata
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Hospital Biobanks now focus on collecting prospective samples
BIOBANK LOCATION CATCHMENTAREA BIOBANKTYPE
AuriaBiobank Turku 869000 Hospital
HelsinkiBiobank Helsinki 1904000 Hospital
TampereClinicalBiobank Tampere 1111000 Hospital
BiobankofEasternFinland Kuopio 816000 Hospital
BiobankofCentralFinland Jyväskylä 275000 Hospital
NorthernFinlandBiobankBorealis
Oulu 742000 Hospital
THLBiobank Helsinki 5400000 Mostlypopula9oncohorts
HematologicalBiobank Helsinki 5400000 Diseasespecific
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The Helsinki Biobank potential
500 000patientsannually
(HUS)
1/3 of theFinns born in
HUSMeilahti campusamong the top 5
in Europe
Pathologysamples of
1,4M patientswith
electronicdata
All the majormedical
specialties(HUS)
CareaEksote
CollaboratorsCCC
FIMMAaltoTHL
Helsinki Biobank
• Prospec9vecollec9onofsamplesini9atedin2016:10000newconsents&sampleswithin3months
• BiobankingisoneofthehighestprioritydevelopmentareasofHelsinkiUniversityHospital
• 2017:Aimtocollectbiobanksamplesfrom10%ofallpa9ents(50000)
• 2018:Aimtocollectbiobanksamplesfrom25%ofallpa9ents(125000)
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TARGETEVALUATIONand
FOLLOWUPSTUDIES
POPULATIONISOLATE
HEALTHREGISTERS
BIOBANKS GENOMEDATA
+ + +
WhyFinland?
Na)onalRegisters
Hospitaldischarge
Hospitalprocedure
Outpa9entvisit
Outpa9entprocedure
Primarycare
Primarycareprocedure
Cancerregister
Causeofdeath
Drugpurchase
Drugreimbursement
ICDcode
Drugcode(ATC)
Procedurecode
Procedurecode
ICDcode
ICDcode
ICD,O-3code
ICDcode
Procedurecode
ICDcode
De-id
en9fi
ca9o
n,(P
seud
ocod
ing)
Registerdataforresearch
Genomedata
Otherphenotype
data
FIMM-THLResearchSandbox
Na9onal Cohorts
Extensivehealth,phenotype,
metabolomicdata
Na9onalregistries
Genomewidegenotypedata80000
Sequences>30000WES5400WGS
Imputa9on
Popula9onspecificchip/genotyping
Na9onalreferencedatabase
Popula9oncohorts&diseasespecificcollec9ons
SISU- Sequencing Initiative Suomi
ExampleoftheIPHGproject:• Interna9onalgene9cresearchcollabora9on• Partners:Broad,FIMM,THLBiobank,Merck,Pfizer,Eisai,Biogen• Resultsshared!
Public Private Partnerships have become feasible
FinnGen - Aim for a Nationwide PPP Effort
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0100000200000300000400000500000600000
2016 2017 2018 2019 2020
DNAsamplesfrom500000studypar9cipantsandGWASdata
Allbiobankstopar9cipate
Amajorpossibilityforbiobankresearch
Boosterforlarge-scalebiobankopera9onsna9onwide
Samplesinregisteredbiobanks
Towards one-stop-shop
Finnishbiobanksandtheirbackgroundorganiza9onsallagreethatasinglena9onalorganiza9onoroperatorisanecessity
MinistryofSocialAffairsandHealth&THLnominatedanExpertGrouptoinves9gatethepossibili9estoestablishsuchanoperator.
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Recommendations by Biobank Expert Group: § Establishajointlegalen9ty”BiobanksFinland”
• Boardwithmembersfromallbiobankorganiza9ons• Officialrepresenta9onofallFinnishbiobankingac9vi9es• ResponsibleofTransparencyandaccountabilityregardtopublic,ELSI,datasafetyandaccesscontrol
§ Establishajointserviceprovider”BiobanksFinlandServices”• Localbiobankac9vi9esremainbut:• Localbiobankswillu9lizeopera9onalsevicesprovidedbyajointserviceprovider(Ltd)
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Prerequisites for success
Succesfulcollabora9onofbiobanks&opera9onof”BiobankFinland”asaone-stopshop
Trustofsampledonorsistakencareof
Samplesandrelateddataisu9lizedforhealthcare
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