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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.
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The sources of the data sets include data sets donated by researchers, surveys carried out by SRDA, as well as by government department and other academic organizations. Prior to the release of data sets, the confidentiality and sensitivity of every survey data set are evaluated. Standard data management and cleaning procedures are applied to ensure data accuracy and completeness. In addition, metadata and relevant supplement files are also edited and attached.