This webinar, part of the biocuration series, will introduce the concept of sensitive data, for example, data relating to individual patients. It will also discuss how controlled data resources that contain sensitive data are able to archive and share the data with researchers, and the best practices for assembling metadata for a rare disease submission.

To give an example of how controlled data resources work, the European Genome-phenome Archive (EGA) will be introduced. The EGA is a resource that archives and shares all types of personally identifiable genetic and phenotypic data resulting from biomedical research projects. The webinar will discuss why restricted access to the EGA’s data is required, what information about the data can be viewed by anyone and how researchers can gain access to the data they need. 

This webinar is the fourth in our series of webinars on the topic of biocuration. In an ELIXIR survey in 2019, which aimed at identifying training needs in biocuration, the most commonly indicated were programming, development and use of ontologies and database management. In addition skills like programming and extracting data from literature were mentioned as decisive for a successful biocuration career. With our webinar series we want to help to close this gap: Bicourators from different backgrounds and institutes will share their experience on how they have acquired these relevant skills in their job, how they apply these in their works and why they benefit from it. The speakers will also point to helpful tools and resources they use.