OD4RD : Orphanet Data for Rare Diseases Direct Grant kicks off
The Orphanet Data for Rare Diseases Direct Grant (OD4RD) is a one-year project co-funded by the European Commision’s EU4Health programme.The aim of OD4RD is to increase the visibility of rare diseases in Health Information Systems by achieving real implementation of ORPHAcodes in hospitals, to increase the quality of data generated about RD patients by disseminating best practices for coding with ORPHAcodes, and to provide the means to generate accurate data for exploitation and analysis by European Reference Networks (ERNs), hospitals and decision makers, notably to improve their understanding of RD activities. The project also aims to contribute to the EU Health Data Strategy by connecting the dots with structuring initiatives around EHR formats and health data spaces (EHDS) both for primary use in order to achieve better diagnosis and care of RD patients, (for example for the assessment of current practices and results against gold standards of care), as well as for secondary use, to inform policy decision-making and research.
The project kicked-off with a meeting gathering the Orphanet network and ERN representatives on the 21st of March. It gathered 68 participants from 19 countries, including 18 representatives of 13 ERNs. The meeting revolved around how OD4RD will build on Orphanet’s specific expertise, and on its organisation as a long-lasting, well-established network, to fulfil the following general objectives:
- To contribute to the generation of standardised, interoperable data on RD diagnosis for primary and secondary use, through maintenance of the Orphanet nomenclature of RD in collaboration with ERNs, and active support for its implementation in hospitals hosting ERNs,
- To contribute to the harmonisation of data collection amongst various settings (health records, registries) and amongst countries, through dissemination of coding good practices at the source (health records, registries, etc).
- To support evidence-based decision-making in the frame of the European strategy around ERNs, by providing an exploitable reference corpus of data and information on RD.
These objectives will be reached through a number of workpackages, around the maintenance and update of the Orphanet nomenclature and classification of RD, the development of the Orphanet knowledge and information base around RD in collaboration with ERNs, the development of national Orphanet nomenclature hubs to ensure optimal implementation at national level, and support to the EC in its ERN strategy through dedicated IT systems.
