BlueBerry successfully delivers the final Blueprint

The Blueberry has been successfully concluded with a positive final event on August 29, 2024, and the completion of the blueprint on building a rare cancer registry.

What has the blueprint delivered?

The BlueBerry Blueprint outlines a strategic plan for the scalability and sustainability of the EURACAN Registry, focusing on rare adult solid tumor cancers within the European Reference Network (ERN) EURACAN. The document addresses the challenges of scaling up the registry, ensuring data privacy, and harmonizing data across multiple healthcare centers in Europe, while also aligning with emerging European health data initiatives.

Key Highlights

Purpose and Goals:

· The blueprint aims to define a sustainable path for the EURACAN Registry, enabling large-scale data collection and analysis of rare cancers to improve patient outcomes.
· The blueprint provides a roadmap for the transition from clinical to research data, implementation of a federated infrastructure, and the navigation of complex legal frameworks.

Challenges:

· Harmonizing data practices across healthcare centers with varying protocols and maintaining data quality
· Ensuring compliance with diverse European legal frameworks
· Securing sustainable funding and fostering collaboration among stakeholders.
· Ensuring correct competencies are in place and that personnel have the capacity to deliver
· Complexity of registry and operations means finding any one suitable coordinating center is difficult

Governance and Operations:

·  The current governance, led by INT in Milan, is effective but strained by administrative and personnel constraints and funding limitations
·  The blueprint proposes a more sustainable operational structure, including the identification of key organizational competencies necessary for managing a federated and pan-European registry.

Data Infrastructure:

·  The blueprint details the implementation of the (OMOP) to harmonize data and facilitate federated learning and analysis using vantage6.
·  It addresses challenges in data transformation, harmonization, and quality assurance, emphasizing the importance of maintaining data integrity and minimizing information loss.

Legal Framework:

·  Navigating the complex legal landscape of European and national legislations is crucial forthe registry's success. The blueprint sketches the relevant GDPR principles and provides a description of the legal documentation and framework.
·  EURACAN registry to exist in a federated infrastructure.

Future Directions:

·  The blueprint advocates for integrating the EURACAN Registry into the broader European Health Data Space (EHDS) by remaining a FAIR and federated data infrastructure.
·  It outlines a path towards securing long-term sustainability via an exploration of the strengths and capabilities of other European organization