[This is a post from our colleagues of the Research Data Office]
Today is World Digital Preservation Day (WDPD). The aim of this day is to create greater awareness of digital preservation. It is celebrated on the first Thursday of every November.
Digital Preservation Coalition: “Digits: for Good” this year especially refers to the hard work, resilience, and responsiveness of our colleagues which will enable research and development data used in finding a vaccine for COVID-19 to be preserved, shared and studied; it represents the fact that decision making in the management of the pandemic will be captured for future generations; and it describes the support which will be available to organisations around the world as they work to sustain themselves through this unprecedented time. It also goes beyond the pandemic, to all of the exciting and essential digital preservation work taking place right now!”
Today, Tilburg University emphasizes the importance for the long-term preservation of research data. We will take a closer look at the registry of “Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)”.
PROFILES is a registry for the study of the physical and psycho-social impact of cancer and its treatment. Data come from a dynamic, growing population-based cohort of both short and long-term cancer survivors. PROFILES aims to provide a national and international resource for research into the psycho-social well-being of cancer survivors.
An online lunch meeting about the PROFILES Registry will be organized in the Spring of 2021 open to the general public.
Topics to be discussed:
Please keep an eye on the university’s event calendar for the exact date. We will also post an announcement on our blog.
For questions, you can contact the Research Data Office.
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