Andy
Senior Member (Voting rights)
About the Event:
Many high-burden conditions remain locked in a cycle of neglect: limited research funding leads to limited data, which in turn makes it harder to secure the grants needed to build real research momentum. This is particularly true for less common and rare cancers, and post-infectious diseases (including Long Covid and ME-CFS). In this seminar, we present a practical and repeatable model for breaking that cycle.
Drawing on international consortia established in rare cancers (atomCAT and DIGICORE), our speakers will show how multi-centre research in under-resourced disease areas can be delivered at scale using privacy-preserving federated analytic approaches. This enables robust analysis across countries without centrally pooling sensitive patient data, helping collaborations remain compliant with privacy laws and modern governance requirements.
The session will describe how Action For ME want to apply this model to paediatric ME/CFS and Long Covid, starting with international clinical audit and quality improvement: comparing diagnostic pathways, service access, treatment approaches and early outcomes across countries.
More details and registration
Many high-burden conditions remain locked in a cycle of neglect: limited research funding leads to limited data, which in turn makes it harder to secure the grants needed to build real research momentum. This is particularly true for less common and rare cancers, and post-infectious diseases (including Long Covid and ME-CFS). In this seminar, we present a practical and repeatable model for breaking that cycle.
Drawing on international consortia established in rare cancers (atomCAT and DIGICORE), our speakers will show how multi-centre research in under-resourced disease areas can be delivered at scale using privacy-preserving federated analytic approaches. This enables robust analysis across countries without centrally pooling sensitive patient data, helping collaborations remain compliant with privacy laws and modern governance requirements.
The session will describe how Action For ME want to apply this model to paediatric ME/CFS and Long Covid, starting with international clinical audit and quality improvement: comparing diagnostic pathways, service access, treatment approaches and early outcomes across countries.
More details and registration
