National CAncer data Node DeveLopErs

ongoing

Despite decades of devoted research, cancer remains a tremendous health threat and societal burden. Europe's Beating Cancer Plan aims to improve the lives of more than 3 million people by 2030 by improving prevention, early detection, diagnostics, therapeutics, and quality of life. The biggest single hurdle here is the highly inadequate way cancer data, both from research and healthcare, are still being dealt with. While other areas of society (e.g. e-finance, e-commerce, logistics, travel, meteorology, etc.) have fully exploited advances in data and information technology to serve organisations as well as individual consumers, so far this has failed in the health domain. Consequently, cancer data are hard to Find, Access, make Interoperable and Reuse. Evidently this is not caused by lack of suitable technology, but rather by organisational, social and cultural causes. Inherently, solving the problem requires a cultural shift from the current craftsmanship approach to cancer research and data, to a drastic collaboration model at industrial scale. CANDLE therefore aims to scale-up and improve existing (inter)national health data infrastructures, align maximally with national EHDS implementations in member states, including HDAB’s, DAAMS’s and SPE’s. CANDLE will also identify and resolve potential barriers (https://www.health-ri.nl/en/participation/obstacles-removal-trajectory ) that jeopardize effective implementation of UNCAN.eu and ECPDC digital platforms. CANDLE aims to equip data users and NCDN developers with a ‘ready-to-use' CANDLE Resource Kit in a process oriented (research journey, patient journey, data life cycle) way. This action is part of the Cancer Mission clusters of projects 'Understanding' and ‘Quality of Life’ established in 2022 and 2023. In summary, CANDLE will provide an avenue towards a successful and highly desired data transformation in European cancer research and serve as a catalyzer for the UNCAN.eu and ECPDC platforms by advancing the development of NCDNs to reach the goal of the Cancer Mission and Europe’s Beating Cancer Plan, i.e. reducing the burden of cancer.