Riksmarschkohorten National March Cohort ext0166-1-1 Swedish National Data Service Svensk nationell datatjänst http://brain.oxfordjournals.org/content/138/2/269.long Riksmarschkohorten National March Cohort ext0166-1-1 Trolle Lagerros, Ylva Trolle Lagerros, Ylva Bellocco, Rino Bellocco, Rino 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 http://brain.oxfordjournals.org/content/138/2/269.long HEALTH HÄLSA Three pages of this questionnaire were devoted to physical activity, the main focus of the project. Both previously validated and newly developed questions were used in order to estimate energy expenditure and to distinguish between constant low-level activity and short-term peak activity. We used a new rating scale for self-reports of time spent on different intensity levels of physical activity (and inactivity) during a typical day, allowing estimation of total energy expenditure on an interval scale level. This scale has been shown to be both valid and reliable. Seven pages contained questions about diet, using a 63-item validated semi-quantitative food frequency questionnaire that allows estimation of total energy intake and calorie adjustment. Supplementary questions were asked about intake of fried food, detailed pattern of alcohol intake, dietary supplements and use of health food preparations. Two pages had questions about anthropometrical measures, including height, weight (birth weight, current weight, and weight fluctuations), waist and hip measures (allowing calculations of BMI, lean body mass, waist-hip ratio). Further, three pages were allocated to questions about various background and possibly confounding factors such as country of birth, environment during childhood and adolescence, birthplace of parents, own education, type of employment. Two pages were about smoking (including passive smoking) and snuff dipping habits. One page was dedicated to vaccination history, two pages to medical history, two pages to pharmacological history. Two pages were about sun and UV exposure, possible use of sunbeds, and type of complexion. Five pages were spent on questions concerning the psychosocial history, including validated sets of questions about demands and autonomy at work, life events, self-perceived health, social support, as well as duration and quality of sleep. Sleep disturbances were assessed using a modified version of the Karolinska Sleep Questionnaire (KSQ), a widely used tool to assess quality and restorative function of sleep. One page was about the use of mobile telephones. Two pages were devoted to questions specific for women (age at menarche, parity, infertility, menstruation, menopause, use of oral contraceptives and hormone replacement therapy). Essentially complete follow-up has since been attained through multiple record linkages, using the individually unique national registration numbers (NRNs) to ensure exact linkages. We have linked the cohort to Statistics Sweden’s Register of the Total Population and Population Changes, and to the Patient Register, Cancer Register, Causes of Death Register, and Prescribed Drug Register from the National Board of Health and Welfare, permitting accurate tracking of vital and health status of all cohort members. Presently, we have complete follow-up through 2010. We are currently applying for new linkages, which will allow us to have information updated through 2012. Purpose: In September 1997, the Swedish Cancer Society organized a four-day national fund-raising event, the National March, in almost 3,600 cities and villages around the country. In conjunction with this event, we established the Swedish National March Cohort. The cohort consists of 43,880 well-motivated men and women who participated in the National March in support of the Swedish Cancer Society. With a 36-page questionnaire about lifestyle, exposure was assessed in much greater detail than in almost any other cohort. Essentially complete follow-up is attained through multiple linkages with high-quality Swedish registers. I samband med Cancerfondens Riksmarsch 1997 fyllde 43 880 svenskar i ett detaljerat 36-sidigt frågeformulär om livsstil och hälsa en sk prospektiv kohortstudie. Deltagarna gav samtidigt sitt samtycke till framtida uppföljning medelst samkörningar med de högkvalitativa svenska befolknings- och hälsoregistren. Kohorten, unik i sitt slag med tanke på detaljrikedomen för både exponering och utfall, har tillräckligt med fall för att ge den statistiska styrka som behövs för att kunna studera livsstilens betydelse och dess association för många av våra vanligaste sjukdomar. Målet är att kunna omsätta kunskapen vi får fram, till rekommendationer och förebyggande åtgärder. Syfte: I september 1997 organiserade den svenska Cancerfonden ett nationellt insamlingsevent, Riksmarschen, som pågick under fyra dagar i nästan 3 600 städer och byar runt om i landet. I samband med detta etablerades Riksmarschkohorten, the National March Cohort. Kohorten består av 43 880 män och kvinnor som deltog i Riksmarschen för att stödja för den svenska Cancerfonden. Med ett 36-sidigt frågeformulär om livsstil, kan exponering bedömas mycket mer detaljerat än i nästan alla andra kohorten. Uppföljning sker huvudsakligen genom kopplingar till flera svenska register av hög kvalitet. 1997-09-11 1997-09-14 IndividualIndividual IndividIndivid The population consists of women and men in Sweden, 18 years or older. Populationen består av kvinnor och män i Sverige över 18 års ålder. Numeric Non-probabilityNon-probability Icke-sannolikhetsurvalIcke-sannolikhetsurval 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 Yang F, Trolle Lagerros Y, Bellocco R, Adami HO, Fang F, Pedersen NL, Wirdefeldt K. Physical activity and risk of Parkinson's disease in the Swedish National March Cohort. Brain. 2015 Feb;138(Pt 2):269-75. doi: 10.1093/brain/awu323. Epub 2014 Nov 18. Yang F, Trolle Lagerros Y, Bellocco R, Adami HO, Fang F, Pedersen NL, Wirdefeldt K. Physical activity and risk of Parkinson's disease in the Swedish National March Cohort. Brain. 2015 Feb;138(Pt 2):269-75. doi: 10.1093/brain/awu323. Epub 2014 Nov 18. 2015 Lagerros YT, Bellocco R, Adami HO, Nyrén O. Measures of physical activity and their correlates: the Swedish National March Cohort. Eur J Epidemiol. 2009;24(4):161-9. doi: 10.1007/s10654-009-9327-x. Epub 2009 Mar 18. Lagerros YT, Bellocco R, Adami HO, Nyrén O. Measures of physical activity and their correlates: the Swedish National March Cohort. Eur J Epidemiol. 2009;24(4):161-9. doi: 10.1007/s10654-009-9327-x. Epub 2009 Mar 18. 2009