Recently EATRIS co-hosted a joint BY-COVID project & EATRIS Long-COVID Network event in Amsterdam, supported by the project. It was a fantastic day filled with insightful discussions, mutual learning, & inspiring steps forward.
As the world takes starts to see a decline in the burden of COVID-19, we are now realising a rise in the number of people suffering from the post-COVID-19 syndrome (commonly known as Long-COVID). These people experience a wide set of symptoms, including persistent fatigue, post-exertional malaise after minimal physical or mental effort, disturbed sleep patterns which together are representing a substantial healthcare burden worldwide. To address this “silent pandemic” researchers from across the EATRIS network have joined forces to bring their unique expertise together to focus on this new debilitating disease to address its unknown aetiology, clinical variability, and lack of diagnostic biomarkers and treatments.
Thanks to the support of the BY-COVID project, data scientists from this consortium had an opportunity at a workshop on 26-27 June, to discuss with immunologists, clinician and infectious disease experts to create a path forward of combing their expertise to tackle this disease. The BeYond-COVID project has worked successfully over the past few years to make COVID-19 data accessible to scientists in laboratories but also to anyone who can use it, such as medical staff in hospitals or government officials. Going beyond SARS-CoV-2 data, the project will provide a framework for making data from other infectious diseases open and accessible to everyone.
During this informative workshop, all experts present discussed a roadmap of actions to pursue the needed funding to create the right team to translate novel scientific discoveries into benefits for unmet clinical needs of Long-COVID patients. Central to this team’s goals is to raise awareness, recognition and societal knowledge for this new disease which has a severe impact on patients’ quality of life and now poses a significant public health and socioeconomic burden.
