NEWS

From Lab to Patient

The journey of a medicine assessed by EMA The European Medicines Agency has just published an interactive timeline describing the journey of a medicine for human use authorised through EMA, from initial research to discussions on patient access to medicines across the EU. This tool is based on a booklet published earlier this year, and allows the user to Read more about From Lab to Patient[…]

Paediatric ERNs Crosslinks: The story of Íñigo

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 Read more about Paediatric ERNs Crosslinks: The story of Íñigo[…]

Real-world evidence to support HTA/payer decisions about highly innovative technologies

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 Read more about Real-world evidence to support HTA/payer decisions about highly innovative technologies[…]

Training: Hands-On introduction to NGS variant analysis

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 Read more about Training: Hands-On introduction to NGS variant analysis[…]

European survey on national training activities in clinical research

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 Read more about European survey on national training activities in clinical research[…]

ICPerMed Recognition 2020

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 Read more about ICPerMed Recognition 2020[…]

“Yakup’s Journey to Hope” video in collaboration with EJP RD

Yakup’s Journey to Hope was created in collaboration with EJP RD and GA4GH Driver Project. Follow the story of Yakup as he embarks on a journey to find a diagnosis for his neurogenetic rare disease condition. At GA4GH Plenary 2019, Dr. Sergi Beltran of EJP RD shares how the driver project has helped one patient Read more about “Yakup’s Journey to Hope” video in collaboration with EJP RD[…]

Strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe

Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda falls in the framework of the proposed European Health Innovation Public-Private Partnership (PPP) under Horizon Europe. Its objective is to guide future public-private Read more about Strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe[…]

GA4GH 7th Plenary

GA4GH 7th Plenary is happening now, this week, October 21-23! If you’re unable to attend in person, tune in to the Plenary live stream via the GA4GH youtube channel. A video, on a positive patient story where sharing genomic data and international collaborations have been fundamental for the patient and the family, will be launched during Read more about GA4GH 7th Plenary[…]