ELIXIR-NL Rome BYOD workshop helps establish FAIR rare disease registries

The 5th “International Summer School on Rare Disease and Orphan Drug Registries” and the ELIXIR Netherlands Node’s 4th “Bring Your Own Data” (BYOD) workshop united in Rome 18-22 Sept. to help attendees transform their data sets into Findable, Accessible, Interoperable and Reusable (FAIR) rare disease patient registries.

Registries — places that hold information about individuals with specific diseases or the drugs to treat them — help researchers and health care professionals to better understand rare diseases over time. The summer school and BYOD workshop taught attendees strategies for developing these registries sustainably using their own requested data.

To learn more about ELIXIR initiatives to FAIRify rare disease registries, visit the ELIXIR-NL page of the Dutch Techcentre for Life Sciences (DTL) site.

Tue 24 October 2017