European projects work is organised into “work packages” (WP). A work package can be thought of as a sub-project, which, when combined with other work packages, form the completed project. OD4RD is composed of 5 WP which objectives are described below.
|1||The main objective of this WP is to manage the action and to ensure that the project is implemented as planned. The coordination team will establish the project governance structure, ensure internal and external communication and information exchange., establish a monitoring plan for the activities and ensure quality of the project implementation and risk management. It will also provide day-to-day administrative support to the partners and it will ensure budget management. The coordinator will assume timely communication with the HADEA and the DG SANTE.|
|2||The main objective of this WP is to develop, update and continuously maintain the Orphanet nomenclature (ORPHAcodes) and classification of RD, in collaboration with ERNs, in line with the evolution of knowledge.|
|3||The main objective of this WP is to develop, update and maintain continuously the Orphanet nomenclature (ORPHAcodes) and classification of RD, in collaboration with ERNs, in line with the evolution of knowledge and To develop and continuously maintain the data associated with RD, and in particular genetic data and the alignments of ORPHAcodes with the main terminologies in use in health information systems and registries (including ICD-10 & 11, SNOMED CT and OMIM), in order to improve the semantic interoperability in the RD domain. In addition, to create and update the textual information associated with RD|
|4||The main objective of this WP is to ensure support for the local implementation of ORPHAcodes in national HCPs hosting ERNs and national HCPs linked to ERNs by establishing Orphanet national nomenclature support hubs.|
|5||The main objective of this WP is to put in place the necessary mechanisms to deliver and update the Orphanet nomenclature and knowledge base (as reference body of data) in the European Commission Information system for ERNs and To analyse and produce reports on RD coverage, identifying overlaps and gaps amongst ERNs in order to support evidence-based decisions in the context of ERN coordination, Board of Member States (BoMS) and European Commission activities.|