The World Duchenne Organization is pleased to announce that thanks to a collaborative initiative driven by their technical partners, FAIR Data Systems in Madrid, a FAIR Training Program will be available online to all those interested in understanding the value and future impact of the FAIR Guiding Principles. This is the outcome of the latest…
The board game FAIRopoly developed by EJP RD illustrates the FAIRification steps followed by the ERNs registries to make their data more Findable, Accessible, Interoperable, and Reusable. The player starts the game on the top left corner of the board and moves around clockwise one tile at a time. Follow the link to fully explore…
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.…
The BioData World Congress 2021 organised by Terrapinn is Europe’s largest congress covering big data in pharmaceutical development and healthcare aimed to showcase innovation, demonstrate success and break through the obstacles and barriers to ensure that innovations in genomics and big data enter the clinic with speed and efficiency. This in-person event will take place in Basel, Switzerland over three days from November 2nd–4th.…
On October 6th, 2021, the European Commission (EC) opened a new funding call titled “Tackling diseases (Two Stage – 2022) (HORIZON-HLTH-2022-DISEASE-06-two-stage)” in the context of the Horizon Europe Framework Programme on the development of new effective therapies for rare diseases. Since the EC recommends that proposals try and take stock of the FAIR guidance and other models…
Last March, the World Duchenne Organization in collaboration with Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing for Duchenne. During this meeting, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare. Click here to read the full report In order to improve care…
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…
The FAIRplus project, which aims to develop tools and guidelines for making life science data FAIR (Findable, Accessible, Interoperable, Reusable) is organizing a webinar entitled « Discovering the FAIR Cookbook ». The webinar will take place on May 26, 2021 from 14.00 – 15.00 CET. The event will include a presentation of the FAIR Cookbook by the resource’s developers and project coordinator…