RD-CODE Workshop in Malta

RD-CODE Workshop in Malta

The workshop took place on 24 and 27 November 2020. It gathered 36 participants from Malta and 5
speakers. Representative from the 16 Mater Dei Clinical departments were present as well as
government representatives, all Directorate for Health Information & Research (DHIR) Registries
managers and Hospital Information Systems specialist and several consultants (detailed participants
list in page 9).
Initially this event was planned as a face to face event, however because of the travel restrictions
following the first and second wave of COVID19 pandemic in Europe the event was organised as an
online event.During the workshop a brief presentation of Rare Disease Registration in Malta was given to the
audience. This was followed by a presentation of the Spanish ORPAHcode Implementation Work
carried out in the framework of the RD-CODE by FISABIO as well as the Veneto Region RD Registry
experience. Then, the goals of the RD-CODE project were presented as well as the Orphanet
Nomenclature production process and outcomes. Followed by progresses on the RD-CODE tools and
guidelines availability. Discussions concerning the set up of the Maltese Registry were most beneficial,
in particular thanks to the presence of all experts from the different fields. All materials and
information are available in the attached presentations and recordings, which were taken during the
workshop.