Partner4VRT: Advancing Research on Very Rare Tumours in Children, Adolescents and Young Adults
Partner4VRT is an EU4Health-funded project, coordinated by the CCRI, bringing together European and U.S. researchers to improve knowledge and treatment of very rare cancers in children, adolescents, and young adults, focusing on pancreatoblastoma and adrenocortical carcinoma.
A pilot collaborative observational study will be established as a proof of concept to accelerate progress by joining forces to increase the accrual of sufficient numbers of patients for meaningful analyses. The target cohorts will be analysed by age, sex, race, ethnicity, and clinical presentation. Genetic, clinical, and treatment-specific characteristics will be collected to enable the identification of potential biomarkers for early detection, diagnosis, prognosis, risk classification, therapeutic response, and drug development. Patient-centric research will be fostered by involving advocacy groups and patients in designing ethical data-sharing protocols, as well as patient-reported outcomes (PROs).
This smaller-scale project will address practical and legal challenges related to data collection, regulatory alignment, and the integration of complex data types, including molecular data, imaging, and PROs.
The consortium has established its Legal Helpdesk, delivered a Quality Assurance Plan for the sake of the smooth implementation, organised a series of consensus meetings to harmonise ACC and PBL variables and PROMs, and has started working on the study protocol. In June 2026, the consortium delivered a Communication and Dissemination Plan, to ensure visibility of Partner4VRT, led by SIOP Europe as the subcontractor of CCRI for Work Package 2 on Communication and Dissemination.
The project has already gained visibility through several dissemination activities. During Adolescent and Young Adult Cancer Awareness Week, Partner4VRT was featured in SIOP Europe's social media campaign, highlighting the project's relevance to adolescent and young adult oncology within a broader awareness initiative. To learn more about this initiative, explore our AYA Cancer Series.
In terms of important meetings and conferences, the project was presented at the 7th SIOP Europe Annual Meeting (Glasgow, 4–7 May 2026) during the Projects in the Spotlight session. In addition, Partner4VRT was also featured at the ERN PaedCan General Assembly on 6 May 2026, where partners shared an update on the project's progress.
🎗️ For more information, please visit the project's website.