BlueBerry - Co-creating a Blueprint for Building a sustainable, effective, and scalable Euracan Rare Cancer RegistrY - is an infrastructure project with participants from 9 institutions in 7 European countries.
The main goal of the project is to utilize new infrastructure and methods to make relevant information on rare cancer types available and shareable across Europe in a secure and privacy-friendly manner.
The European network for rare adult cancer diseases - EURACAN - laid the foundation for this work through its STARTER project. BlueBerry takes this work further and aims to establish a technical, semantic, and legal infrastructure for a federated registry where only anonymous, aggregated data will be shared in the network, with privacy-sensitive information stored in secure areas within the responsible institutions in each country.
The project utilizes OMOP for data model and semantic standardization across different nodes and Vantage6 as the federated network structure.