ERN TRANSPLANT-CHILD PATIENT’S GUIDE

ERN TransplantChild gives some important recommendations for transplanted patients and their families to take care of their health after this complex procedure. The guide is common for all types of transplants and includes different aspects of the post-transplantation process such as medication, rejection, infections, emotions and some frequently asked questions. The Patient’s Guide is in English, Read more about ERN TRANSPLANT-CHILD PATIENT’S GUIDE[…]

GA4GH: Regulatory and Ethics Perspective on COVID-19 Data Sharing

Efficient international collaboration and data sharing, two key components in the advancement of genomic medicine and human health, are proving essential for effectively responding to the global COVID-19 pandemic. The Global Alliance for Genomics and Health is focused on developing standards and guidance for responsibly sharing human genomic and related health data. Because of this, the Read more about GA4GH: Regulatory and Ethics Perspective on COVID-19 Data Sharing[…]

Coronavirus: Commission issues guidance to mitigate clinical trial disruption in the EU

The Commission has published guidance to ensure that clinical trials can continue taking place in the EU during the COVID-19 pandemic. The aim is to mitigate the disruption of clinical research in Europe and therefore the negative effects of the pandemic, without compromising on quality and safety. These recommendations are an important part of the overall Read more about Coronavirus: Commission issues guidance to mitigate clinical trial disruption in the EU[…]

ELIXIR All Hands 2020

The sixth ELIXIR All Hands meeting will take place virtually 8 -10 June 2020. The meeting brings together members of the ELIXIR community from across the ELIXIR Nodes, and collaborators from partner organisations, in order to review ELIXIR’s achievements and activities so far and discuss plans for the future.  Participants from ELIXIR Nodes and invited Read more about ELIXIR All Hands 2020[…]

Latest progress on Horizon Europe’s Implementation Strategy

The rules and simplification measures put in place for Horizon 2020 were widely acknowledged by stakeholders as a big step towards a more attractive and easier to use programme. Based on this experience, work has been ongoing on Horizon Europe’s Implementation Strategy to set out how the programme will be managed in practice to achieve its ambitious Read more about Latest progress on Horizon Europe’s Implementation Strategy[…]

ECRIN COVID-19 TASKFORCE

ECRIN – European Clinical Research Infrastructure Network – has established a COVID-19 Taskforce with its national partners to confront the international COVID-19 crisis. ECRIN is working in together with the healthcare systems taking care of patients as highest priority. At the same time, ECRIN is supporting the researchers by joining forces worldwide to find a Read more about ECRIN COVID-19 TASKFORCE[…]

GA4GH OmicsXchange Podcast: Re-envisioning the Data Access Process

Large-scale sequencing initiatives are generating massive volumes of clinical genomic data that have the potential to inform research into human health and disease. But controlling access to these data is currently a cumbersome endeavor. Researchers must be properly authorized and their intended use must match the datasets’ consented use. The GA4GH Data Use and Researcher Read more about GA4GH OmicsXchange Podcast: Re-envisioning the Data Access Process[…]

Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook is out!

The IRDiRC new review has been published on Nature Reviews – Drug Discovery. The paper is authored by the Orphan Drug Development Guidebook (ODDG)  Task force that has helped reaching the IRDiRC goal 2 ‘1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options’ by 2027. Read more about Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook is out![…]