The first international federated clinical registry on rare head and neck cancers

Annalisa Trama, Fondazione IRCCS Instituto Nazionale Dei Tumorinnalisa Trama 

Health professionals and researchers need to pool data from patients to understand the course of a disease and investigate new diagnostic procedures and treatments to improve patients’ treatment. However, when it comes to rare cancers, due to the small number of patients, it is often difficult to gather enough data at the country level. For this reason, the collection of patient data across Europe is necessary to improve prognosis and quality of life of patients with rare tumours.

A unique opportunity, to collect data across Europe, are represented by the European Reference Network (ERNs) which are networks of healthcare professionals and patient advocates for rare diseases across Europe working together to support patients with rare and complex diseases and conditions. EURACAN is the ERN dedicated to rare adult solid cancers (e.g., head and neck cancers, sarcomas, cancer of testis etc.).

We developed the EURACAN registry for head and neck cancers. The registry collects data on patients with head and neck cancers from expert health care providers (HCP) in different EU member states. In each HCP we support the installation of open source tools for the case registration (RedCap) and analyses (Vantage6). Vantage6 was intentionally developed to facilitate privacy-preserving analyses across multiple decentralized data sources (i.e. parties) ( Request for analyzing the data can be sent to the involved parties and only aggregated, non-sensitive data is returned, after which the results for all parties are combined. Each party, in a Vantage6 collaboration, hosts its own data, and has complete control over which analysis may be executed on their data. The Vantage6 infrastructure allows for a wide range of analyses, hence algorithms at increasing levels of sophistication will be developed later for this registry.

We are developing technologies that enable data partners to use directly their data. This will lead to a greater access to data and to a greater capacity to perform useful research to increase knowledge on rare cancers. At a clinician level, benefits of our approach include enhanced attitudes towards research and an increased uptake of research evidence into practice. The proposed federated technologies facilitate healthcare centres as they will simplify their IT strategy regarding data access and sharing paving the way to the European Health Data Space.

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