Monash-led alliance sets out roadmap for global lymphoma data collaboration
Credit: Science Photo Library
The Global Lymphoma Registry Alliance (LyRA) has published its first peer-reviewed paper, a roadmap for improving lymphoma outcomes through international, real-world data collaboration. Published in the journal Haematologica, the paper sets out why lymphoma registries matter to the wider community, and the case for bringing them together into one global alliance. Such an alliance, the authors argue, serves both research and the public interest by connecting patients, community organisations, clinicians, policy-makers, regulators and industry around a shared goal of using real-world data responsibly.
Co-first authors Professor Eliza Hawkes, Chair of the LyRA Steering Committee, and Ms Eliza Chung, LyRA Project Manager and doctoral candidate, both from the School of Public Health and Preventive Medicine, drew on expert insights from researchers and registry leaders across Australia, the United Kingdom, Canada, the United States, Italy, Germany, Sweden, the Netherlands, France, Argentina, the Czech Republic, Denmark and Singapore, alongside the Lymphoma Coalition, a network of over 100 patient organisations across more than 55 countries.
“Lymphoma covers more than 80 different types, many of them rare, and new drugs for these cancers are increasingly approved based on small trials in selected patient groups, often using early markers of success rather than tracking outcomes over the long term,” said Professor Hawkes. “We emphasise that data from patients treated in everyday care are now essential to filling in those gaps, both before and after a new treatment reaches wider use.”
LyRA has already identified 49 existing lymphoma registries, spanning 35 jurisdictions around the world, with variation in methods, data management, disease scope, funding and governance models. The alliance takes an open approach, welcoming any systematic real-world lymphoma dataset to join. Its roadmap sets out how these existing registries can work more closely together: shared ways of recording and defining data, common governance and data-sharing agreements developed with legal and privacy expertise, and technology that enables data analyses from multiple registries without patient information leaving the institution or country where it was stored.
“As LyRA's first peer-reviewed publication, the paper depicts our vision to make better use of lymphoma registries to improve patient outcomes and support data-driven healthcare planning,” said Ms Chung. “We aim to establish the alliance as a global platform for collaboration, research and innovation in lymphoma care.”
Listen to Professor Hawkes’ insights: