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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.
ScholarsArchive@OSU is Oregon State University's digital service for gathering, indexing, making available and storing the scholarly work of the Oregon State University community. It also includes materials from outside the institution in support of the university's land, sun, sea and space grant missions and other research interests.
Arca Data is Fiocruz's official repository for archiving, publishing, disseminating, preserving and sharing digital research data produced by the Fiocruz community or in partnership with other research institutes or bodies, with the aim of promoting new research, ensuring the reproducibility or replicability of existing research and promoting an Open and Citizen Science. Its objective is to stimulate the wide circulation of scientific knowledge, strengthening the institutional commitment to Open Science and free access to health information, in addition to providing transparency and fostering collaboration between researchers, educators, academics, managers and graduate students, to the advancement of knowledge and the creation of solutions that meet the demands of society.
The Africa Health Research Institute (AHRI) has published its updated analytical datasets for 2016. The datasets cover socio-economic, education and employment information for individuals and households in AHRI’s population research area in rural northern KwaZulu-Natal. The datasets also include details on the migration patterns of the individuals and households who migrated into and out of the surveillance area as well as data on probable causes of death for individuals who passed away. Data collection for the 2016 individual interviews – which involves a dried blood spot sample being taken – is still in progress, and therefore datasets on HIV status and General Health only go up to 2015 for now. Over the past 16 years researchers have developed an extensive longitudinal database of demographic, social, economic, clinical and laboratory information about people over the age of 15 living in the AHRI population research area. During this time researchers have followed more than 160 000 people, of which 92 000 are still in the programme.