This autumn, the National Centre for Rare Diseases (CNMR) of the Istituto Superiore di Sanità, Rome, Italy is organising two training events on rare disease registries:
- The 4th International Summer School on Rare Disease and Orphan Drug Registries (26-28 September 2016). The event is addressed to health professionals, researchers, clinicians and representatives of patient associations involved in establishing rare disease patient registries. Using the Problem-Based Learning methodology, we introduce the attendees to the aims and needs of clinical research registries.
- The RD-Connect BYOD (Bring Your Data) Workshop to Link Rare Disease Registries (29-30 September 2016). The workshop is a blend of a hackathon (an event where computer experts and other stakeholders work together on a software project) and a hands-on tutorial, where data owners generate their first own linked data and make them FAIR (Findable, Accessible, Interoperable and Reusable), which allows information exchange with other systems.
Important dates, additional information, updated programs and any updates on the events are available on the Institute’s website.
Registration is open until 10th of July 2016 and can be carried out for either one or both events via the online form.