Advancing Secondary Use of Clinical Data: Enhancing Data Readiness and Interoperability across CCCs

Project brief

Task 8.2.5 aims to enable the secondary use of clinical data to support governance, quality improvements, and cross-border research collaborations across aspiring and established CCCs. By improving data readiness and personnel capacity of centres, our task will lay the foundation to improve the quality of data capture at the source. This will support generating high-quality real-world evidence and enable learning from every patient.

Objectives (Summary)

• Facilitate harmonisation of data management and exchange practices to ensure data consistency and comparability across CCCs
• Share solutions for using clinical data to monitor activity and care through dashboards
• Provide support for multi-centre collaboration to gather high-quality real-world data and generate real-world evidence, with a special focus on secondary use of clinical data in childhood cancer

Lead

View the teams and institutions involved in this task.

How external partners can help

• Respond to stakeholder mapping here: EUnetCCC Secondary Use of Clinical Data: Stakeholder Nominations
• Participate in data holder’s maturity assessments
• Participate in webinars and workshops
• Participate in feasibility tests

Our activities

Stakeholder mapping - Establish a multidisciplinary network of professionals, including clinical data management professionals, CCC leaders and administrators, and clinicians and researchers actively participating in outcomes research both within and across CCCs.

Workshops - Provide platform for CCCs to co-develop use cases, data catalogue, and analysis plans for feasibility tests.

Data readiness assessments and feasibility tests - Facilitate standardised data holder’s maturity assessment of CCCs and participation in feasibility tests to improve data readiness.

Data summit - Facilitate dialogue between leaders and other stakeholders from CCCs to address infrastructure and resource needs, and co-develop frameworks to improve secondary use of data in CCCs.

Collaboration within EUnetCCC - Collaborate to provide recommendations on data collection and harmonisation practices across different thematic areas, including precision diagnostics, research and survivorship.

Collaboration other initiatives - Facilitate engagement of CCCs as implementation hubs - for testing of tools and frameworks (QUANTUM, TEHDAS2, CANDLE, eCAN plus) and as sites for advanced outcomes research studies (UNCAN.CONNECT, FALCON).

Webinar series - Provide platform for knowledge exchange and alignment between different initiatives focused on enabling secondary use of clinical data.

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