Pooled Data stored and shared: Transfer final processed data for long‐term use

1    PooledDatastoredandshared: Transferfinalprocesseddataforlong‐termuse.  Projecttitle:EarlyEnvironmentalqualityandlife‐coursementalhealtheffect ProjectNumber:874724 ProjectAcronym:Equal‐Life   Workpackage10‐DeliverableD10.6       HISTORYOFCHANGES VersionPublicationdateChange 1.131‐12‐2024 Initialversion 1.231‐02‐2025 Adaptedandreadytobedistributedforreview 1.331‐03‐2025 Adaptedbasedoncommentsandreadytobeuploaded 1.415‐05‐2025 Submitted H2020programGrantagreementnumbers874724(Equal‐Life), Projectstartdate:Jan1 st 2020Duration:60months ProjectCoördinator:IrenevanKamp(RIVM)  WP(numberandtitle)EQUAL‐LIFEWP10 DeliverableNumberEQUAL‐LIFED10.6 DeliverableTitlePooleddataset Duedate31‐12‐2024 D10.6:Transferfinalprocesseddataforlong‐termuse 2 Actualdate15‐05‐2025 DisseminationLevelPublic LeadbeneficiaryRIVM ResponsibleauthorsIrenevanKamp,HendriekBoshuizen E‐mail/phone responsibleauthors [email protected] Hendriek. [email protected] +3130886893222 +3130886892934 Co‐authorsPetervandenHazel Pvdhazel<[email protected]> MarcoBalduini [email protected] ReviewersAllPI’s  D10.6:Transferfinalprocesseddataforlong‐termuse 3 Contents Contents..................................................................................................................................................3 1.Executivesummary.........................................................................................................................4 2.DataSummary.................................................................................................................................5 2.1.Existingdata.............................................................................................................................5 2.2Sixin‐depthstudies...................................................................................................................5 2.3Enrichedandvalidateddata.....................................................................................................6 3.Transferingdataforlongtermuse..............................................................................................7 3.1Wix..........................................................................................................................................8 3.2Zenodo................................................................................................................................8 4.Implementationandmaintenance.............................................................................................9 5.Otherissues................................................................................................................................9 6.Referencesselect......................................................................................................................10 Glossary.............................................................................................................................................11 Annex1:............................................................................................................................................12 Annex2:............................................................................................................................................13 Annex3.............................................................................................................................................15 Annex4:............................................................................................................................................17    D10.6:Transferfinalprocesseddataforlong‐termuse 4 1. Executivesummary  Thisdeliverable(D10.6)describesthefinaltransferofprocesseddataforlong‐termuseincludingthe Equal‐Lifewebsite(Studyingtheexposomeforahealthierfutureforallchildren|EqualLife),Equal‐ Lifetoolboxandguidebook,aggregatestatistics,meta‐data,anonymizedenricheddata,codes,pooled results,modelsfordatamining,patentfillingsetc. AdetaileddescriptionofthedifferentproductsoftheEqual‐LifeprojectwasprovidedinD10.5and Annex3inthisdocument.Theseproductswillbeaccessibleindifferentchannels,includinganopen accesswebsitewithnorestrictions(https://www.equal‐life‐toolbox.eu/).Deliverable10.6ispartof Task10.3.Datamanagement,ledbyRIVMandco‐ledbyINCHESandQUANTIA.Thistaskfocuseson themanagementofprojectdataincludingrawdataandthederivedandprocessedfinaldata.During theproject,theresearchdatawerestoredcentrallyataserveratRIVMforprocessingandmidterm storage.Alongethicalguidelines,theoriginaldatastaywiththeownersandwillonlybepooledat resultlevel.Thisimpliesthatmatchingoftheexposuredatatothe(mentalhealthandcognitive)out‐ comedataalsohappenspercohort/dataset.ThepooleddatawerestoredattheRIVMplatform(Via‐ desk)forfurtherstatisticalanalysisinthedifferentworkpackages.Thedatacollectedinthein‐depth studiesweredealtwithbytherespectiveownersofthecohorts.Thenewdatacollectedfromschool‐ childrenaremanagedbytheinstituteperformingthemeasuresandundertheirnationalregulations. Thedataanddailymodificationsduringdataprocessingarebackedupdailytonetworkdrives.This datarepositorywasusedalsoforsharingwiththepartnersintheconsortium.Inclosecollaboration withthepartnersdealingwithcommunication,dissemination,andtooldevelopmentthistaskplanned andimplementedthesharingofnoveldataandresultscreatedintheproject.Thisalsoincludesplan‐ ningandimplementingthetoolboxandguidancedocument.Aftertheprojectisfinishedtheexpo‐ somedataandthepooledresultsareincorporatedintheEqual‐Lifetoolbox.Deliverable10.5(confi‐ dential)describesthewaysinwhichdataismadeaccessibleinternallyandexternallyalsoafterthe lifetimeoftheproject.Hereasummaryispresented. AlldatawillbearchivedonViadeskbyRIVMaswellastheAS,thepooledresultsandanonymised exposuredataofthosecohortsthatallowthedatatobemadepublicinZenodo,anEUrepository. Alink(https://zenodo.org/communities/equal_life) willbeprovidedontheEqual‐Lifewebsitehttps://www.rivm.nl/en/international‐projects/equal‐life andintheEqual‐lifetoolsandGuidebookwhichisexternallyhostedat(https://www.equal‐life‐ toolbox.eu/).Specifically,thetoolboxwasdevelopedusingtheWixplatform,whichalsoprovides hostingservices. Duringtheplatformselectionprocess,weensuredthatWixcomplieswithall relevantEuropeanregulations(e.g.,GDPR).Thetoolboxwillbehostedalsoaftertheprojectby contractuntilMay2026.Fortheperiodafterthisadditionalfundingwillhavetobesought(seealso D10.5andD10.7).AnoverviewoftheEqual‐LifeproductsintheEqual‐Lifetoolboxisprovidedin Annex3.    D10.6:Transferfinalprocesseddataforlong‐termuse 5  2. DataSummary  2.1. Existing data:elevencohorts(birthcohortsandschoolstudies). ThenamesofthesecohortsandcontactdetailsandothercharacteristicsarelistedinAnnex1 Equal‐Lifeusesprimarilyexistingdataderivedfromninecohorts,andthreelongitudinalandcross‐ sectionalstudiesinschoolchildren(N=>250.000pp)innineEUmemberstates.Thedatacontain informationfromchildren(prenataluptoage21)andtheirparents.Theexistingdatawasenriched withdatarelatedtotheexternalexposome(physicalandsocial)andintermediateeffectmarkers(in‐ ternalexposomeoncelinkedtoexposures), 2.2 Six in-depth studies. Inaddition,datahasbeencollectedfromschoolchildrenactivities(inSweden,Belgium,Germany,and theNetherlands)tostudythedistinctmechanismsunderlyingtheassociationofenvironmentalexpo‐ sureswithmentalhealthandcognitivedevelopmentindicators,includingphysicalaswellassocial aspects(stress/restoration,sleep,supportiveenvironmentsforchildrencopingandself‐regulation). Inasampleofschoolchildren,activitypatternsinfortheiragerelevantsettingswerestudied.Also, datawerecollectedabouttimeactivitypatternsinchildrenandadolescents(intheNetherlands)and duringexperimentsonchildren’sauditorycognition(inAachen,Germany). Note(Annex2)thatSleepstudy(Alpine8‐14years)hasbeenreplacedbySleepstudy(Alpine11‐14 years).ThereasonsforthatchangearealsodescribedintheupdatedAnnex1oftheGApartBand havebeenapprovedbytheECviaanamendment.  D10.6:Transferfinalprocesseddataforlong‐termuse 6 Table1:Overviewofin‐depthstudies  GDPRdoesnotallowformakingthedatafromthein‐depthstudypublic.Theycanbesharedwith researcheriftheaimsalignwiththeinformedconsentofparticipants(seeD12.6)andwithagreements ofthePI’s(seecontactlistinAnnex4).  2.3 Enriched and validated data InthefirstphaseoftheprojecttheXYcoordinatesweredeliveredbythedata‐ownerstothedata enrichers.Also,thebio‐sampleswereselectedandtransferredtothelaboratoryperformingthe experiments.Datavalidationhappenedatbothsidesaniterativeprocessmeaningtheproviderand receiverside.Thisprocessisnowfinished.Importantfeaturesarethattheenrichmenttakesplace perdatasetandthatthedataset,oncecompleted,willnotbestoredexceptattheowner’sside.In otherwords,thedataownersdonotseeorshareeachother’s(enriched)data.Amongtheenrichers themselvesmodelsmightbeexchangedaswellastheunderlyingdata,butthisishighlydependent onthevariablesathand.Providingenricheddataminusthexycoordinatesandpseudonymizedby dummyaddresseswillbesharedinZenodo. ProvidingIDsandXYcoordinatesby9dataownerstothe6dataenrichers.(Done) ProvidingIDsageandgenderto1dataenricher;(Done) EnrichingtheXYcoordinateswithexposuredataby6enrichers;(Done) EnrichingtheIdsofselectedchildrenwithbiomarkersby1enricher.(Done)  Table2:OverviewofthestatusoftheDataTransferAgreementson27‐06‐2024   Asshownintable2,theexchangeofXYcoordinatesisnowfinalized.Thisdatawasneededforthe dataownersandenrichersandnocentralstoragewasneeded.Thisimpliesthattherehasbeenonly =notapplicable =DTAsigned JohnGulliver(ULEIC) GabrieleBolte(UB) AlessandroBozzon(TUD) MaartenHornikx(TUE) DickBotteldoorn(Ugent) MariaForaster(ISGlobal) KatjaKanninen(UEF) 1ABCD Dataavailable TanjaVrijkotte(AMC) 2ALSPAC Nodataavailable CharlotteClark(ARUP) 3PIAMA Dataavailable JolandaBoer(RIVM) 4a RANCH‐NL Dataavailable ElisevanKempen(RIVM) 5NORAH Dataavailable MariaKlatte(TUK) 6Alpine Dataavailable PeterLercher(GUT) 7STARS Dataavailable YunChen(UGOT) 8BREATHEand WALNUTS Dataavailable MariaForaster(ISGlobal) 9FAIR Dataavailable JennySelander(KI) 10 FinnTwin12 Dataavailable JaakkoKaprio(UH) 11 DatatransferISG‐UE F Dataavailable MariaForaster(ISGlobal) StatusDataTransferEqual‐LifebasedoninformationViadesk,27June2024 DatareceiversGroup# Viadesk Dataset Dataprovider Dataavailableon Viadesk(No /Yes ) LEGENDA Datacollectionstudies Responsiblepartner TimeactivityexposurepatternstudyTU/e Auditorycognitioninactivity‐basedacousticsettingsRWTH PreschoolstudyGermanyTUK/ZEUS PreschoolstudyBelgiumUGhent SleepstudyonsubsampleofAlpinecohortcancelledGUT SecondaryanalysesonsubsampleofAlpinecohort(11‐14 years) GUT Sleepstudyonsubsampleofstarscohort(17‐19years) UGOT D10.6:Transferfinalprocesseddataforlong‐termuse 7 anexchangeofdataandoncethisprocessofexchangewasfinishedthefilesattheexchangenodeof theRIVMwasremoved.Itwascheckedwhetherthesizeoftheenricheddatasetscausesissues, estimatedtobeoveramillionrecords(lines),includingdummycoordinates,andsome500columns atmax.  Forvalidationofthedatawedonotneedaspecifiedfunctionality.Thistaskisthecalloftheenrichers beforetheysharethedataagainandofthecohortowners(whenreceivingtheenricheddataset). Analysisbytheenricherswillhappenwiththeirowntools,modelsetc.  Specialattentionisneededforversionmanagementonthedatafiles;possiblymorethanoneiteration isneededtooptimisetheenrichment.Andalsotheprocessofvalidationcanleadtomultipleversions ofthedatafiles.Itwasrecommendedtocentralisedecisionmakingaboutthis.Also,itshouldbe decidedhowthecommunicationaboutthesedifferentversionsisorganizedandwhatplatformis suitableforthis(NBViadeskdoesnotfacilitatesuchinteraction,butversioncontroliswell established).  Exchangeofdataonthebuiltenvironment(D5.7&D5.8)andnaturalenvironment(MS8)and environmentalquality(D3.3)isfinished.  Actionsperformed 1.Testthemaximumsizeofexchangedatasets o CheckedifViadeskandMSTeamsprovidethefunctionalityneeded(done) o Arrangedforaccessrightinthefiles.(done) o Saveformats(CSVandGeoJSON).done 2.Exchangeofmodelsanddatabetweenenrichers.  Someenricherssharedmodelcodesoftransportmodelsandunderlyingdata.Thebestsolutionfor internalcollaborationinrelationtoamodelcodeisGitHub.They(will)alsoprovidecodeofthe exposuremetricsdevelopedfordataenrichment,soitisnotonlyabout(transport)models.Alsothere isawishtoexchangetheunderlying(traffic)datasuchastrafficvolumes,numberoftrains(day,night), distancetogreenarea,meanareaofgreen/bluespace).Thesewillbegeospatialdatathatcan,indeed, beprojectedonamap,butmostofthemwillbedataattributesintabularformat(withattachedgeo‐ locationperdatarecord(attributestothesemapsaresimpletablescontainingforexampleheightof buildingsortrafficcountsonstreets).ItwasconfirmedthatallpartnerscanworkwithGITand exchangescanbeperformedinCSVfiles. AnoverviewofthedataisprovidedinAnnex3,wherebyadistinctionismadebetweenMETADATA, DATAanCODES. 3. Transferringdataforlongtermuse TheEqual‐Lifetoolboxandguidebook,metadata,publications,pooledresultsandcodesaremade availableintwoplatforms:thewebsite(https://www.equal‐life‐toolbox.eu/)andtheEUrepository Zenodo(https://zenodo.org/communities/equal_life).Adescriptionisprovidedinthenext paragraphs. D10.6:Transferfinalprocesseddataforlong‐termuse 8 3.1 Wix Wix.comisacloud‐basedwebdevelopmentplatformthatallowsuserstocreateandmanage professionalwebsites.Theplatformprovidesanintuitivedrag‐and‐dropeditor,avastlibraryof customizabletemplates,andasuiteofbuilt‐intoolsthatfacilitateseamlesscollaboration.Wixenables co‐designandco‐creationwithusersbyallowingmultiplecontributorstoworkonawebsite simultaneously,offeringrole‐basedaccesscontrols,andintegratingreal‐timefeedbackmechanisms. Thesefeaturesmakeitavaluablesolutionforindividuals,smallbusinesses,andorganizationslooking tobuildandrefinetheironlinepresenceefficiently. Wix’sEuropeanheadquartersislocatedinDublin,Ireland,whereitprovidesregionalsupportand ensuresadherencetoEuropeanregulations.BymaintainingastrongpresenceinEurope,Wix continuestoenhanceitsserviceswhilealigningwiththelatestlegalandregulatoryrequirements concerningdataprivacy,cybersecurity,anddigitalcommerce. Wixplacesastrongemphasisondatasecurityandprivacyandoperatesinfullcompliancewiththe GeneralDataProtectionRegulation(GDPR).Theplatformprovideswebsiteownerswithdedicated toolstomanageuserconsent,controlpersonaldata,andgenerateGDPR‐compliantprivacypolicies. Usershavetheabilitytoaccess,modify,ordeletetheirpersonaldata,ensuringtransparencyand adherencetoEuropeandataprotectionstandards. Toensurehighperformance,reliability,andsecurity,WixstoresandprocessesdataforEuropean userswithinEU‐baseddatacenters,reinforcingitscommitmenttoGDPRcomplianceandminimizing datatransfersoutsidetheEuropeanEconomicArea(EEA).  3.2 Zenodo Zenodo(https://zenodo.org)isanEUOpenResearchRepositoryandisaZenodo‐communitydedi‐ catedtofosteringopenscienceandenhancingthevisibilityandaccessibilityofresearchoutputs fundedbytheEuropeanUnion.ThecommunityismanagedbyEuropeanOrganizationforNuclear Research(CERN)onbehalfoftheEuropeanCommission. ThemissionoftherepositoryistosupporttheimplementationoftheEU'sopensciencepolicy,provid‐ ingatrustedandcomprehensivespaceforresearcherstosharetheirresearchoutputssuchasdata, software,reports,presentations,postersandmore.TheEUOpenResearchRepositorysimplifiesthe processofcomplyingwithopensciencerequirements,ensuringthatresearchoutputsfromHorizon Europe,Euratom,andearlierFrameworkProgramsarefreelyaccessible,therebyacceleratingscien‐ tificdiscoveryandinnovation. TheEUOpenResearchRepositoryservesasacomplementaryplatformtotheOpenResearchEu‐ rope(ORE)publishingplatform.OpenResearchEuropefocusesonprovidingapublishingvenuefor peer‐reviewedarticles,ensuringthatresearchmeetsrigorousacademicstandards.TheEUOpenRe‐ searchRepositoryprovidesaspaceforalltheotherresearchoutputsincludingdatasets,software, posters,andpresentationsthatareoutofscopeforORE.Thisholisticapproachenablesresearchers tonotonlypublishtheirfindingsbutalsosharetheunderlyingdataandmaterialsthatsupporttheir work,fosteringtransparencyandreproducibilityinthescientificprocess. D10.6:Transferfinalprocesseddataforlong‐termuse 9 TheEUOpenResearchRepositoryisfundedbytheEuropeanUnionundergrantagreement no.101122956(HORIZON‐ZEN).Formoreinformationabouttheprojectseehttps://about.ze‐ nodo.org/projects/horizon‐zen/.ZenodoisfundedbytheEuropeanCommission. WeselectedZenodoastheprimaryrepositoryforlong‐termarchiving,asitoffersatrusted,sustaina‐ ble,andsecuresolutionforpreservingoutputsbeyondthelifetimeoftheproject.WhileGitHubre‐ mainsthepreferredplatformforactivedevelopmentandcollaborationduringtheproject,Zenodo providesamorerobustoptionforpermanentstorage.Nonetheless,theGitHubrepositorywillremain accessibleforseveralyearsaftertheproject'scompletiontoensurecontinuityandeaseofaccess. Zenodoaddressestheneedforlong‐termpreservationbycreatingapermanentarchivelinkedto GitHub,ensuringthatkeyoutputsremainavailableandcitableovertime.Belowisasummaryofkey differences: ‐ ArchivalPermanence:Zenodoisspecificallydesignedforlong‐termpreservation,retaining archiveditemsforthelifetimeofCERN(minimum20years).Eachreleaseisstoredasatarball, assignedaDOI(DigitalObjectIdentifier),andmadeindependentfromGitHub,ensuringitre‐ mainsunchangedovertime. ‐ DigitalObjectIdentifiers(DOIs):ZenodoautomaticallyassignsDOIstoeacharchivedrelease, facilitatingacademiccitationandimprovingdiscoverability. ‐ IntegrationwithGitHub:ZenodooffersseamlessintegrationwithGitHub,automaticallyar‐ chivingeachreleaseandgeneratinganewDOI,thussimplifyingtheprocessofcreatingacit‐ able,permanentversionofthesoftwareordataset. BycombiningGitHubforongoingdevelopmentandZenodoforfinalarchival,weensurebothusability duringtheprojectandpreservationbeyonditsduration.  4. Implementationandmaintenance AnaccounthasbeenopenedatZenodoandthedataandcodeswillbesubmittedstepwise beforetheendoftheprojectinJune2025butpreferablyatanearlierstage.Maintenanceis guaranteeduntiltheexistenceofCERN.Thepotentialriskisthatifthedatawillbedeposited inJunethereisnotmuchmargintocreatethelinkbetweenZenodoandtheEqual‐Lifetoolbox. Therefortheprocesswillhavetospeedupasmuchaspossibleandthecoordinatinginstitute willtakeonboardthetaskofmaintenanceofthetoolboxwithadditionalfunding.  5. Otherissues n.a. D10.6:Transferfinalprocesseddataforlong‐termuse 16 ‐Casestudiesof equityimpact assessmentofurban interventions/Good practice  WP4(WP7) OpenwebsiteUniversityBremen KarolinskaInstitute  ‐Conceptualmodels onmechanisms…. (WP1)andonthe SocialExposome (WP4) WP1/WP4OpenwebsiteGothenburgUniversity UniversityBremen ‐Frameworkto considerequity aspectsinurban interventions WP4OpenwebsiteUniversityBremen IIDATA    ‐Enricheddata withoutthexy coordinates Includingfake addresses WP3,WP5Accesscan onlybe givenwith consentof thedata owners ZenodoCohortownersSeetable5* AggregatestatisticsWP6/WP7‐Accessto AScanonly begiven withconsent ofthedata owner withinthe consortium aswellas outsidethe consortium ZenodoCohortownersseetable5* PooledresultsWP6/WP7Accessto pooled resultsonly withconsent ofalldata ownersof data includedin thepooled results ZenodoRIVM D10.6:Transferfinalprocesseddataforlong‐termuse 17 ‐Linkagebetween biomarkersand exposures(internal exposome). WP2,andcohort owners Biomarker determinant swillbe managed andshared bythe responsible institutes andunder their national regulations Sharingwith othersislimited FinnTwin12data findablein https://thl.fi/en /research‐and‐ development/th l‐biobank/for‐ researchers UEF IISPV HelsinkiUniversity IIICODES   Codesenabling pooleddataanalyses WP6(in collaborationwith WP7) Zenodo RIVM ‐Codesenablingdata enrichment Seealsoabove ‐Newexposuredata ormodelstoobtain thesederivedinWP 3,4and5 WP3,WP4,WP5 ZenodoISGlobal StGeorgeUniversity Technicaluniversity Eindhoven UniversityGhent TechnicalUniversityDelft BremenUniversity   Annex4:Contactdetailsperinstitute No Name Short name Country Contact details 1 RIJKSINSTITUUT VOOR VOLKSGEZONDHEID EN MILIEU RIVM Netherlands [email protected] 2 GOETEBORGS UNIVERSITET UGOT Sweden YunChen <[email protected]> 3 ITA-SUOMEN YLIOPISTO UEF Finland Katja Kanninen <katja.kanni- [email protected]> 4 UNIVERSITY OF LEICESTER ULEIC United Kingdom Anna Hansell <ah618 @ leicester.ac.uk> 5 UNIVERSITAET BREMEN UB Germany Gabriele Bolte <[email protected]> 6 TECHNISCHE UNIVERSITEIT DELFT TUD Netherlands Achilleas Psyllidis <A.Psyl- [email protected]> 7 KAROLINSKA INSTITUTET KI Sweden 'Jenny Selander' <[email protected]> 10 FUNDACION PRIVADA INSTITUTO DE SALUD GLOBAL BARCELONA ISGlobal Spain Payam Dadvand <payam.dad- [email protected]rg> 11 TECHNISCHE UNIVERSITAT KAISERSLAUTERN RPTU Germany Maria Klatte [Soz.-Wi.] <[email protected]> ListofBeneficiaries D10.6:Transferfinalprocesseddataforlong‐termuse 18 12 UNIVERSITEIT GENT UGent Belgium Dick Botteldooren <Dick.Botteldooren @ UGent.be> 13 HELSINGIN YLIOPISTO UH Finland Kaprio, Jaakko A <[email protected]> 14 TECHNISCHE UNIVERSITEIT EINDHOVEN TU/e Netherlands Maarten Hornikx <M.C.J.Hor- [email protected]l> 15 ZEUS GMBH, ZENTRUM FUR ANGEWANDTE PSYCHOLOGIE, UMWELTUND SOZIALFORSCHUNG ZEUS Germany Dirk Schreckenberg (ZEUS) <[email protected]> 17 TECHNISCHE UNIVERSITAET GRAZ GUT Austria Peter Lercher <[email protected]> 18 RHEINISCH-WESTFAELISCHE TECHNISCHE HOCHSCHULE AACHEN RWTH Germany Janina Fels <[email protected]> 20 QUANTIA CONSULTING SRL Quantia Italy 'Marco Balduini' <marco.balduini@quantiaconsul ting.com> 22 FUNDACIO INSTITUT D'INVESTIGACIO SANITARIA PERE VIRGILI (IISPV) IISPV Spain Jordi Julvez Calvo <[email protected]> 23 ST GEORGE'S HOSPITAL MEDICAL SCHOOL SGUL United Kingdom John Gulliver <jgul- [email protected]> 