REGISTRY OF THE EUROPEAN REFERENCE NETWORK ON RARE ADULT SOLID CANCERS
Research type
Research Database
IRAS ID
347880
Contact name
Thuy-Giang Nguyen
Contact email
Research summary
REGISTRY OF THE EUROPEAN REFERENCE NETWORK ON RARE ADULT SOLID CANCERS “EURACAN”
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
25/EE/0059
Date of REC Opinion
16 May 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Core data elements will include the "Set of common data elements for Rare Disease Registration" developed by JRC (https://eu-rd-platform.jrc.ec.europa.eu/set-of-common-data-elements) to address specificities of rare cancers as compared to rare diseases.
Following the EURACAN registry objectives, data will be prospectively collected on patient characteristics, exposure and outcomes. Patient characteristics will consist of descriptive patient data, such as information on patient demographics, including race, lifestyle, medical history, health status, etc. Exposure data will focus on the disease, devices, procedures, treatments or services of interest. Outcome data will describe patient outcomes (e.g. survival, progression, progression-free survival, death, etc.). In addition, data on potential confounders will also be collected.Research programme
In order to support the development of registries within ERNs, the European Commission decided to set up a European Platform on Rare Disease Registration (EU RD Platform) and to develop specific standards for the interoperability of rare disease registries, drawn up by the Commission's Joint Research Centre (JRC). The EU RD Platform makes rare disease registry data searchable and findable, thus increasing the visibility of each registry. This is ensured by the European RD Registry Infrastructure (ERDRI), which supports the activities of existing and the creation of new registries. The EURACAN registry will be fully compliant with ERDRI requirements, to ensure its interoperability with other rare disease registries, and will be enrolled in ERDRI. The EURACAN registry will therefore be registered in the EU RD Platform. In addition, synergies with other ERN registries will be fostered through the ERN Registries Task Force. Opportunities for partnerships with population-based CRs will also be explored. Finally, the EURACAN registry will be interoperable with the Clinical Patient Management System (CPMS), i.e. the tool developed by the Commission to provide multidisciplinary second opinions for complex case management (i.e. teleconsulations across different expert centres).
Research database title
REGISTRY OF THE EUROPEAN REFERENCE NETWORK ON RARE ADULT SOLID CANCERS “EURACAN”
Establishment organisation
The Royal Marsden Hospital
Establishment organisation address
203 Fulham Road
London
SW3 6JJ