Periodic Reporting for period 1 - 4.UNCAN.eu (A Coordination and Support Action to prepare UNCAN.eu platform)
Reporting period: 2022-09-01 to 2023-11-30
Cancer was identified as the most pressing health challenge for the next decades in Europe. The Mission on Cancer, and the Europe’s Beating Cancer plan, both identified the need for a deeper understanding of this complex disease. The European Commission proposed establishing a unique European digital platform where researchers from all over the world could share and have access to high-quality cancer research data.
The Coordination and Support Action (CSA) 4.UNCAN.eu aimed to generate a roadmap for building this platform organized as a Network. The core of the proposal is the creation of a Federated Cancer Research Data Network that connects cancer research teams and resources (European infrastructures, registries, initiatives) to a Central Node through National Nodes, creating a collaborative ecosystem where data, knowledge, and expertise flow seamlessly to promote open science. UNCAN.eu will champion the principles of Findable, Accessible, Interoperable, and Reusable (FAIR) data. National Nodes will serve as the gateways to a wealth of cancer research data collected from patients and experimental models, in alignment to the General Data Protection Regulation. The network will ensure access to these cancer research data through a centralized, standardized, and equitable process aligned with the European Health Data Space (EHDS) policies when approved by the EU parliament.
The Coordination and Support Action (CSA) 4.UNCAN.eu aimed to generate a roadmap for building this platform organized as a Network. The core of the proposal is the creation of a Federated Cancer Research Data Network that connects cancer research teams and resources (European infrastructures, registries, initiatives) to a Central Node through National Nodes, creating a collaborative ecosystem where data, knowledge, and expertise flow seamlessly to promote open science. UNCAN.eu will champion the principles of Findable, Accessible, Interoperable, and Reusable (FAIR) data. National Nodes will serve as the gateways to a wealth of cancer research data collected from patients and experimental models, in alignment to the General Data Protection Regulation. The network will ensure access to these cancer research data through a centralized, standardized, and equitable process aligned with the European Health Data Space (EHDS) policies when approved by the EU parliament.
Patients, patient advocates and citizens will be part of the network governance. The CSA also proposes to co-create the network with cancer researchers trough use cases. The latter are defined as innovative, cross-border, and trans-disciplinary research challenges addressed in a problem-solving approach.
WP1 played a pivotal role overseeing the progress, ensuring timely deliverable submissions and coordinating activities. Regular ExCom meetings, sessions with EU representatives, and a closing event presenting the final blueprint were organised.
In WP2, focus centered on a robust framework to enhance European collaboration in cancer research. This involved appointing European experts, Delphi consensus processes, face-to-face workshops, refining research use cases, and defining eligibility criteria. Efforts aimed to ensure data management aspects and adherence to diversity, inclusivity, and geographical equity principles across Member States.
WP3 conducted a comprehensive landscape analysis covering policy initiatives in diverse areas of cancer research across Europe and cancer-related infrastructures. Online interviews with key infrastructures, coupled with the creation of a Cancer Data Dashboard, provided insights into data availability, accessibility, and interoperability. Workshops focused on establishing the European Federated Cancer Research Data Hub, generating a roadmap that leverages existing infrastructures for collaborative and standardized data sharing.
WP4 concentrated on early integration of patient advocacy groups and citizens. This inclusive approach involved creating informative videos, conducting an online survey to assess cancer research priorities, and developing a toolbox with educational materials. A significant milestone was the successful meeting at the European Parliament in Strasbourg to garner support from Members of Parliament.
WP5 made substantial contributions by defining a governance structure and proposing a budget for UNCAN.eu. Achievements included outlining a stepwise implementation model, evolving the legal framework, describing operating procedures, mapping initiatives supporting cancer research, and developing a budget proposal to ensure the sustainability of UNCAN.eu in the long term.
Finally, in WP6 focused on addressing inequalities in cancer research across regions. Tasks encompassed assessing scientific outputs, exploring twinning partnerships, facilitating technology transfer, and identifying current inequities in various aspects. The outcomes included valuable recommendations to reduce disparities across Member States and contribute to the development of the UNCAN.eu platform, promoting equity without compromising the excellence of cancer research.
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WP1 played a pivotal role overseeing the progress, ensuring timely deliverable submissions and coordinating activities. Regular ExCom meetings, sessions with EU representatives, and a closing event presenting the final blueprint were organised.
In WP2, focus centered on a robust framework to enhance European collaboration in cancer research. This involved appointing European experts, Delphi consensus processes, face-to-face workshops, refining research use cases, and defining eligibility criteria. Efforts aimed to ensure data management aspects and adherence to diversity, inclusivity, and geographical equity principles across Member States.
WP3 conducted a comprehensive landscape analysis covering policy initiatives in diverse areas of cancer research across Europe and cancer-related infrastructures. Online interviews with key infrastructures, coupled with the creation of a Cancer Data Dashboard, provided insights into data availability, accessibility, and interoperability. Workshops focused on establishing the European Federated Cancer Research Data Hub, generating a roadmap that leverages existing infrastructures for collaborative and standardized data sharing.
WP4 concentrated on early integration of patient advocacy groups and citizens. This inclusive approach involved creating informative videos, conducting an online survey to assess cancer research priorities, and developing a toolbox with educational materials. A significant milestone was the successful meeting at the European Parliament in Strasbourg to garner support from Members of Parliament.
WP5 made substantial contributions by defining a governance structure and proposing a budget for UNCAN.eu. Achievements included outlining a stepwise implementation model, evolving the legal framework, describing operating procedures, mapping initiatives supporting cancer research, and developing a budget proposal to ensure the sustainability of UNCAN.eu in the long term.
Finally, in WP6 focused on addressing inequalities in cancer research across regions. Tasks encompassed assessing scientific outputs, exploring twinning partnerships, facilitating technology transfer, and identifying current inequities in various aspects. The outcomes included valuable recommendations to reduce disparities across Member States and contribute to the development of the UNCAN.eu platform, promoting equity without compromising the excellence of cancer research.
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The CSA blueprint aims to serve as a guide for a Federated Cancer Research Data Hub. Starting with a Central European Node, linked to National Nodes, it will standardize data at the national level for sharing and reuse via UNCAN.eu aligning with FAIR principles.
Since co-creation with researchers and patients was considered as crucial to build a concrete and efficient data network, WP2 prioritized research areas that could alleviate the European cancer burden to propose use cases that may generate breakthroughs in knowledge while generating data that will start feeding the UNCAN.eu metadata catalogue and will be open for reuse by other researchers.
WP4 prioritized patient involvement in UNCAN.eu addressing their needs, promoting dialogue, and integrating their expectations into cancer research.
The landscape analysis in WP3 uncovers insights into data storage, access, and protection, culminating in the Cancer Data Dashboard. The outcomes, surpassing standards, provide a roadmap for the Federated Cancer Research Data Hub.
Anticipated impacts of the project include significant improvements in cancer research, particularly in Central and Eastern Europe, addressing regional inequities. Recommendations underscore involving widening countries in Use Cases. Additionally, the project introduces twinning calls in cancer research, promising substantial mechanisms for impact and growth.
Since co-creation with researchers and patients was considered as crucial to build a concrete and efficient data network, WP2 prioritized research areas that could alleviate the European cancer burden to propose use cases that may generate breakthroughs in knowledge while generating data that will start feeding the UNCAN.eu metadata catalogue and will be open for reuse by other researchers.
WP4 prioritized patient involvement in UNCAN.eu addressing their needs, promoting dialogue, and integrating their expectations into cancer research.
The landscape analysis in WP3 uncovers insights into data storage, access, and protection, culminating in the Cancer Data Dashboard. The outcomes, surpassing standards, provide a roadmap for the Federated Cancer Research Data Hub.
Anticipated impacts of the project include significant improvements in cancer research, particularly in Central and Eastern Europe, addressing regional inequities. Recommendations underscore involving widening countries in Use Cases. Additionally, the project introduces twinning calls in cancer research, promising substantial mechanisms for impact and growth.