Loading Events

Diagnostic Research Workstream – Session 2: Data Sharing, Data Management & Ethics

25 September, 2026 @ 1:00 pm - 2:00 pm CEST
Online event
Intended for researchers, clinicians, data managers, ERN and National Mirror Group members involved in or interested in ERDERA diagnostic research.

This webinar gives an overview of the ERDERA Diagnostic Research Workstream’s data sharing framework, covering the Data Sharing Framework Agreement, ethical/governance requirements, and the data submission process via GPAP/Phenostore and RD3. Intended for researchers, clinicians, data managers, ERN and National Mirror Group members involved in or interested in ERDERA diagnostic research.

Register here.

 

About the ERDERA Diagnostic Research Workstream Webinar Series.

The series brings together ERN healthcare professionals, clinicians, geneticists, researchers, and other stakeholders to learn about the work, progress, and outcomes of the ERDERA Diagnostic Research Workstream (DRW).

Sessions will cover the full scope of the workstream — from governance and methodology to concrete analytical results — offering audiences a transparent and evolving view of how ERDERA is advancing diagnostics in rare diseases.

Delivered as online webinars, the series is accessible to both internal ERN audiences and external expert communities, reflecting ERDERA’s commitment to open knowledge-sharing and collaboration across borders.

Find out more here.