The EJP RD is proud to announce that the Smart Guidance tool for the FAIRification of rare disease registries was released on July 18th. The questionnaire-based Smart Guidance tool is built on the Data Stewardship Wizard; it will guide users (e.g., data stewards) through the process of making their registry more FAIR. It covers various…
As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients’ representatives.…
All ERNs are tasked to set up patient registries that follow the FAIR Principles, as these ‘FAIR registries’ are essential for enabling efficient analysis of data across multiple sources. Existing methods to make clinical trial and registry data (more) machine-readable and FAIR are usually carried out after a research project is conducted and data are…
As part of the training activities proposed by the EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day online training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners, aimed at the international research community, clinicians, medical specialists, registry curators, database…