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The Whitehall II study was established to explore the relationship between socio-economic status, stress and cardiovascular disease. A cohort of 10,308 participants aged 35-55, of whom 3,413 were women and 6,895 men, was recruited from the British Civil Service in 1985. Since this first wave of data collection, self-completion questionnaires and clinical data have been collected from the cohort every two to five years with a high level of participation. Data collection is intended to continue until 2030.
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Exposures in the period from conception to early childhood - including fetal growth, cell division, and organ functioning - may have long-lasting impact on health and disease susceptibility. To investigate these issues the Danish National Birth Cohort (Better health in generations) was established. A large cohort of pregnant women with long-term follow-up of the offspring was the obvious choice because many of the exposures of interest cannot be reconstructed with suffcient validity back in time. The study needed to be large, and the aim was to recruit 100,000 women early in pregnancy, and to continue follow-up for decades. Exposure information was collected by computer-assisted telephone interviews with the women twice during pregnancy and when their children were six and 18 months old. Participants were also asked to fill in a self-administered food frequency questionnaire in mid-pregnancy. Furthermore, a biological bank has been set up with blood taken from the mother twice during pregnancy and blood from theumbilical cord taken shortly after birth.
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SAGE is a data and research platform that enables the secondary use of data related to child and youth development, health and well-being. It currently contains research data, and at a later stage we aim to also house administrative and community service delivery data. Technical infrastructure and governance processes are in place to ensure ethical use and the privacy of participants. This dataverse provides metadata for the various data holdings available in SAGE (Secondary Analysis to Generate Evidence), a research data repository based in Edmonton Alberta and an intiative of PolicyWise for Children & Families. In general, SAGE contains data holdings too sensitive for open access. Each study lists a security level which indicates the procedure required to access the data.
Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)’ is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. Researchers from the Netherlands Comprehensive Cancer Centre and Tilburg University in Tilburg, The Netherlands, work together with medical specialists from national hospitals in order to setup different PROFILES studies, collect the necessary data, and present the results in scientific journals and (inter)national conferences.
The UK Data Archive, based at the University of Essex, is curator of the largest collection of digital data in the social sciences and humanities in the United Kingdom. With several thousand datasets relating to society, both historical and contemporary, our Archive is a vital resource for researchers, teachers and learners. We are an internationally acknowledged centre of expertise in the areas of acquiring, curating and providing access to data. We are the lead partner in the UK Data Service (https://service.re3data.org/repository/r3d100010230) through which data users can browse collections online and register to analyse and download them. Open Data collections are available for anyone to use. The UK Data Archive is a Trusted Digital Repository (TDR) certified against the CoreTrustSeal (https://www.coretrustseal.org/) and certified against ISO27001 for Information Security (https://www.iso.org/isoiec-27001-information-security.html).