BlueBerry
BlueBerry was a two-year project (Sept 2022−Sept 2024). The objective of the project was to develop a blueprint for a sustainable, scalable, and impactful data infrastructure for rare cancers in Europe. It built on the work delivered by STARTER and run together with IDEA4RC) and the EURACAN grants dedicated to the registry. Together, these projects made data from rare cancer patients in Europe available for research and innovation, providing insights that can improve the care and outcomes of patients with rare cancers.
In BlueBerry, the challenges identified by STARTER (organizational, legal, financial, and practical) were being addressed using a multidisciplinary approach. BlueBerry delivered detailed recommendations, by creating a blueprint on the organisation and functioning of the registry in the future. To define the blueprint, BlueBerry intended to include a unique federated data infrastructure for sarcomas, combining and harmonising existing sarcoma datasets within Europe.
BlueBerry is funded by The Dutch Cancer Society (KWF).
Main Goals
Improving the quality of care and prognosis/outcomes for patients with rare cancers
Increasing understanding of rare cancers and supporting rare cancer research
Laying a foundation for an impactful European registry for all rare cancers
Work Packages
WP1
WP1
WP1 Governance and legal framework
The purpose of WP1 was to create an effective governance and a legal framework to simplify the data use, reuse and sharing across different institutions and countries. This was done by implementing data sharing, regulated by sound legal and ethical principles and framed through an agreed governance and data sovereignty approach, coherently with the EU policies. This was needed in order to create a long-term vision of a sustainable registry.
BlueBerry was aiming to deliver a federated registry, where data will remain at the source. But to properly design such a federated registry, choices depended on the European legislation (such as the GDPR) and additional national legislation. A Data Protection Impact Assessment, that is required for the federated registry, was developed. Insights around anonymous and personal data from the participating medical centers were collected and also integrated.
Furthermore, an informed consent process was developed.
WP2
WP2
WP2 Data technology and data inclusion
WP2 was addressing 4 challenges:
• Use of the same data model (data harmonisation)
• Connecting individual registries
• Transparency on data availability and user-friendly analyses
• Data protection
Biomeris worked with the participating centers to harmonize the data according to the OHDSI OMOP Common Data Model. The harmonised data was the foundation of the federated registry, that will be implemented using the Vantage6 open source technology. In parallel, TNO and partners reviewed state-of-the-art in health data spaces in Europe. With the rise of the European Health Data Space (EHDS), it is essential for EURACAN to make sustainable and scalable technology choices.
WP3
WP3
WP3 Valorisation and financial sustainability
The aim for WP3 was to develop a transparent business model to sustainably finance the building and maintenance of a data infrastructure and the data collection of rare cancers, that can be continued in the future. The value proposition for paying entities were also explored, and which business models may be promising opportunities.
Further study was also carried out on the important question: Does the EURACAN registry need to become a legal entity?
WP4
WP4
WP4 Use cases on sarcoma
The aim of WP4 was to test implementation of the blueprint in practice with at least three use cases on Sarcoma, with different value for stakeholders:
Simple use case:
• Provide the distribution of sarcoma subtypes according to histology
• Identify the number of angiosarcoma patients in different datasets
• Identify the number of retroperitoneal sarcoma patients in different datasets
A clinical relevant use case:
•STRASS II is a randomised phase III study of chemotherapy followed by surgery versus surgery alone to improve disease control and survival in patients with high-risk retroperitoneal sarcoma. Can BlueBerry provide insights using real-world data?
•A Sustainability use case: can BlueBerry add values to currently used sarcoma apps (Sarculator and Persarc)?
BlueBerry is a partnership with the following centers in Europe:
- Integraal Kankercentrum Nederland (IKNL), the Netherlands
- Stichting Het Nederlands Kanker Instituut – Antoni van Leeuwenhoek Ziekenhuis, the Netherlands
- Fondazione IRCCS Istituto Nazionale dei Tumori, Italy
- Jheronimus Academy of Data Science (JADS)/ Technische Universiteit Eindhoven, the Netherlands
- Centre Léon Bérard, France
- Oslo University Hospital, Norway
- Fundación Instituto de Investigación Sanitaria Fundación Jiménez Díaz, Spain
- Medical University of Graz, Austria
- Sahlgrenska University Hospital, Sweden
BlueBerry is also a collaboration with:
- TNO
- Biomeris
- Finocchiaro
Contact us
Annalisa Trama
Fondazione IRCCS Istituto Nazionale dei Tumori, Italy, Co-Project Lead
