Stockholms läns folkhälsokohort Stockholm Public Health Cohort ext0171-1-1 Swedish National Data Service Svensk nationell datatjänst Stockholms läns folkhälsokohort Stockholm Public Health Cohort ext0171-1-1 Magnusson, Cecilia Magnusson, Cecilia Swedish National Data Service Svensk nationell datatjänst Swedish Cohort Consortium (Cohorts.se) The Swedish Cohort Consortium (Cohorts.se) is a project aimed at improving management and increasing the use of Swedish population-based cohorts (research databases with sensitive person data) for world-leading research. Coordination of all Swedish prospective population-based cohorts in a common infrastructure will enable more precise research findings and facilitate research on rare diseases and exposures, leading to better utilization of study participants’ data, better return of funders’ investments, and higher benefit to patients and populations. Cohorts.se will support some aspects of single cohort operations and all aspects of collaborations between cohorts. Important components of the infrastructure involve data curation and management, cataloguing of variables, presentation of and access to data, harmonization of variables for research projects, linkage of cohorts and official registries, and statistical analysis including a novel method for distributed data analysis eliminating the need to share data. The project aims to increase collaboration between Swedish universities and with international cohort consortia, and to be a node for researchers who want to collaborate, perhaps extra important for young researchers without a large contact network. SND collaborates with Cohorts.se. Partly through training of data managers and statisticians in the Maelstrom system (maelstrom-research.org), which is tailored for cohort collaboration and will be used in this infrastructure; partly through collaboration around logistics by forwarding researchers seeking access to person data from cohorts to Cohorts.se and the Maelstrom repository. Contact for Cohorts.se: Johan Sundström, Professor at UCR-Uppsala Clinical Research center johan.sundstrom@ucr.uu.se The Swedish Cohort Consortium (Cohorts.se) är ett projekt som syftar till att förbättra förvaltningen och öka utnyttjandet av svenska populationsbaserade kohorter (forskningsdatabaser med känsliga individdata) för världsledande forskning. Genom samutnyttjande av många kohorter kan vi skapa säkrare forskningsresultat till bättre nytta för patienter och allmänhet. Infrastrukturen kommer att omfatta kohorter med känsliga individdata och metadata, mjukvara, och servicetjänster. Infrastrukturen kommer att kurera data, katalogisera kohorter, förvalta kohorter, administrera datauttag och -insättningar och länkningar till andra register, harmonisera variabler vid sammanläggningsprojekt, genomföra statistisk analys, och genomföra utbildningsinsatser. Långsiktig professionell kohortförvaltning som inte är personberoende ger ökad säkerhet och kvalitet. Uniform katalogisering och dokumentation och uniforma uttagsprocesser ger ökad tillgänglighet. Infrastrukturen ger ökat utnyttjande av redan insamlade kohorter, och därmed ökat värde för skattebetalarnas grundinvesteringar i kohorterna. Infrastrukturen kan öka samarbeten mellan svenska lärosäten och med internationella kohortkonsortier, och den kan vara en nod för forskare som vill samarbeta, kanske extra viktigt för unga forskare utan stort kontaktnät. SND samarbetar med Cohorts.se. Dels genom utbildning av data managers och statistiker i den för ändamålet designade mjukvara som framförallt används i infrastrukturen, Maelstrom (maelstrom-research.org). Dels genom att forskare som vill ha tillgång till individdata från kohorter lotsas vidare från SND till Cohorts.se och Maelstrom-katalogen. Kontaktperson Cohorts.se: Johan Sundström, Professor vid Institutionen för medicinska vetenskaper, Uppsala universitet johan.sundstrom@ucr.uu.se Cohort Studies Kohortstudier Data Collection Datainsamling Health Surveys Hälsoundersökningar Epidemiology Epidemiologi Public Health Folkhälsa HEALTH HÄLSA The Stockholm Public Health Cohort is a prospective study set within the framework of the Stockholm County Council public health surveys of 2002, 2006, 2010 and 2014. The surveys involved random samples of the background population of Stockholm county 18 years and above. To date, the study comprise almost 115 000 participants. Baseline surveys took place in 2002, 2006 and 2010 via self-administered questionnaires. So far, participants recruited in 2002 were re-surveyed twice, in 2007 and 2010, and those enrolled in 2006 were re-surveyed once, in 2010. Self-reported data are regularly supplemented by information from national and regional health data and administrative registers, for study participants and their relatives (including their offspring). Available data are extensive and include a wide array of health, lifestyle, perinatal, demographic, socio-economic and familial factors. The cohort is an international resource for epidemiological research, and the data available to the research community for specific studies obtained approval from the Stockholm Public Health Cohort Steering Committee and the Stockholm Regional Ethical Review Board. Purpose: The Stockholm Public Health Cohort was set up within the Stockholm County Council public health surveys to inform on determinants and consequences of significant contributors to the current burden of disease. Self-reported data are regularly supplemented by information from national and regional health data and administrative registers, for study participants and their relatives (including their offspring). The study comprise almost 115 000 participants (Feb. 2017). Stockholms läns folkhälsokohort startades inom Stockholms läns landsting med folkhälsoundersökningar för att informera om determinanter och konsekvenser av betydande bidragande faktorer till den nuvarande sjukdomsbördan. Undersökningarna baseras på ett slumpmässigt urval av befolkningen, 18 år och äldre, i Stockholms län. Hittills omfattar studien nästan 115 000 deltagare. Baslinjeundersökningar genomfördes 2002, 2006 och 2010 genom självadministrerade enkäter. Hittills har de deltagare som rekryterades 2002 återundersökts två gånger, 2007 och 2010, de som rekryterades 2006 har återundersökts en gång 2010. Egenrapporterade data är regelbundet kompletterad med information från nationella och regionala hälsodata och administrativa register, för studiedeltagare och deras släktingar (inklusive deras barn). Tillgängliga data är omfattande och innehåller en stor mängd hälso, livsstil, perinatala, demografiska, socioekonomiska och familjära faktorer. Kohorten är en internationell resurs för epidemiologisk forskning, och datan är tillgänglig för forskningssamhället för specifika studier erhölls godkännande från Stockholms Public Health Cohort steering Committee och Stockholm regionala kommitté. Syfte: Stockholm läns folkhälsokohort bygger på Stockholms läns landstings folkhälsoenkäter och syftar till att ge kunskap om bestämningsfaktorer för, och konsekvenser av, folkhälsoproblem. Egenrapporterade data är regelbundet kompletterad med information från nationella och regionala hälsodata och administrativa register, för studiedeltagare och deras släktingar (inklusive deras barn). Studien omfattar nästan 115 000 deltagare (jan 2017). 2002 Sweden Sverige IndividualIndividual IndividIndivid Numeric Cross-sectionCross-section TvärsnittTvärsnitt Longitudinal: Trend/Repeated cross-sectionLongitudinal: Trend/Repeated cross-section Longitudinell: Trend/Upprepat tvärsnittLongitudinell: Trend/Upprepat tvärsnitt Longitudinal: PanelLongitudinal: Panel Longitudinell: PanelLongitudinell: Panel Longitudinal: Cohort/Event-basedLongitudinal: Cohort/Event-based Longitudinell: Kohort/HändelsebaseradLongitudinell: Kohort/Händelsebaserad Probability: StratifiedProbability: Stratified Sannolikhetsurval: stratifierat urvalSannolikhetsurval: stratifierat urval Self-administered questionnaireSelf-administered questionnaire Självadministrerat frågeformulärSjälvadministrerat frågeformulär Access to data through an external actor. Access to data is restricted. Åtkomst till data via extern aktör. Tillgång till data är begränsad. restrictedAccess Deogan C, Cnattingius S, Månsdotter A. 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