Data dissemination

The PROFILES registry aims to provide a national resource for research into the psychosocial well-being of cancer survivors in conjunction with the Eindhoven Cancer Registry and its clinical embedding that builds on high quality cancer registry data. Therefore, data from PROFILES will be freely available for non-commercial scientific research, subject only to privacy and confidentiality restrictions. Data will be made available through Questacy (DDI 3.x XML) and can be accessed by this website.

In order to arrange optimal long-term data warehousing and dissemination, we follow the quality guidelines that are formulated in the 'Data Seal of Approval' (www.datasealofapproval.org) document, developed by Data Archiving and Networked Services. In short, this means that (1) the data can be found on the internet; (2) research data are accessible (while taking into account ruling legislation with regard to personal information and intellectual property of the data); (3) research data are available in a usable data format; (4) research data are reliable; and (5) research data can be referred to. Also, PROFILES data will be provided with contextual information (metadata). This means that after data collection, the data will be cleaned, coded and provided with sufficient information to enable fellow scientists to access the research data. We will perform first analyses on the data to check the quality and validity. After this process, the data will be freely available for research questions from other non-commercial groups in the Netherlands and abroad after registration.

You can view the available data on the Data Archive page. On this page you can also apply for a user account and download data. To go to the Data Archive, click here.

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