This is a video recently published by ERN TransplantChild to promote the collaboration between pediatric European Reference Networks (ERNs). Crosstalk among ERNs is an important task that could help improving healthcare for rare diseases. Therefore, it is necessary that the networks start collaborating and working together in their overlapping areas. We can « work together for…
Photo submissions for the Photo Award 2020 are now open, until 16th January 2020. The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages and diseases.…
RWE multi-stakeholder initiative – Paper for consultation The draft stakeholder guidance of the multi-stakeholder initiative on ‘Real-world evidence (RWE) to support HTA/payer decisions about highly innovative technologies’ is now open for consultation until 6 January 2020. Commissioned by the Belgian healthcare payer INAMI/RIZIV, this work defines how RWE can be best used to close evidentiary gaps for HTA…
This training gives an introduction to the use of several popular NGS analysis software packages. Target Audience: All scientists When. 20 – 21 January 2020 (10.00 – 17.00) Objectives Using a full publicly available chromosome read-set from one of the 1000 genome samples: Perform a complete analysis workflow including QC, read mapping, read coverage analysis, and…
An interesting publication based on a survey in 11 ECRIN countries, finds significant investment in training in clinical research in individual countries but need for cross-network exchange. Abstract. Investigator-initiated clinical studies (IITs) are crucial to generate reliable evidence that answers questions of day-to-day clinical practice. Many challenges make IITs a complex endeavour, for example, IITs…
Rome (Italy), 6 November 2019 – The International Consortium for Personalised Medicine (ICPerMed) has published the announcement of their third “Best Practice in Personalised Medicine” Recognition 2020. The objective of this recognition is to honour, encourage, promote and disseminate outstanding best practice examples in personalised medicine. Responsible authors (applicants from any country) of candidate proposals…