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…
[PRESS RELEASE] The Critical Path Institute (C-Path), an independent nonprofit organisation, and Pulse Infoframe, a real-world evidence generation, health informatics and insights company, have announced their collaboration to advance technologies and tools to further rare disease research and drug development. Both organisations will support the creation of more streamlined and transparent informed consent processes and…
The European Medicines Agency (EMA) is organising a webinar for small and medium enterprises (SMEs) and academia on the Clinical Trial Regulation (Regulation (EU) No 536/2014) and the Clinical Trials Information System (CTIS). The webinar will take place on November 29, 2021 from 09.00 – 13.15 CET. The webinar is being organised as a training event and will present: an…
EJP RD is co-organising the « Rare Conversations – European Rare Disease Ecosystem: A Collaborative Path Forward » conference in cooperation with Alexion, EURORDIS, EUCOPE, and EuropaBio. The conference is targeted towards representatives of the different communities active in rare diseases: patients, researchers, clinicians, regulators, investors, payers, and industry. The fully online conference will take place on November 9, 2021 from 14.00 – 18.00 CET.…