Collaborating to improve the understanding of rare tumors
Rare Tumors Task Force
Rare cancers cover a diverse collection of tumors that occur rarely in the general population. According to the Surveillance of Rare Cancers in Europe (RARECARE), rare tumors are those having an annual incidence of fewer than 6 per 100,000 people. Furthermore, it is critical to recognize that all pediatric malignancies are considered rare disorders. These tumors are differentiated by their low occurrence rates and lack of comprehensive research, which may complicate diagnosis, therapy, and patient care. Despite their rarity, they account for 24% of all cancer cases identified in the EU and the UK.
Because of the large number of patients affected by rare malignancies, it is critical to invest time and resources in thoroughly researching them. Furthermore, research into rare diseases frequently yields discoveries that are extremely important not only for these diseases, but also for other conditions.
We hope that by forming this task force, we will be able to combine our forces to increase our understanding of rare cancers, and encourage communication and collaboration among over 40 researchers and clinicians from CCE centres. These efforts are initially oriented in two directions: first, increase the molecular understanding of rare cancer, with the overarching goal to unveil novel actionable targets and/or pathways; and second, to launch a real-world data (RWD) collection focused on specific rare tumor types.
BoB data mining project on rare tumors
In order to address this first direction, there is an ongoing project which aims to increase molecular and clinical understanding of rare cancer through the analysis of data from patients with rare tumors from the BoB trial. This project consists of three phases: first identifying patients with rare tumors from all patients who have signed the iPROFILER, then extracting their data of interest from the MTBP and CRF (e.g. pathogenic variables, type of alteration, clinical information or treatment data) and finally pooling and analyzing all the data obtained. This analysis aims to describe the molecular alterations in rare tumors as a whole and by subtype, and their level of actionability and then, correlate them with the impact on patients.
Meet the task force leadership
Cesar Serrano
Co-leader of the Rare Tumors TF Vall d’Hebron Institute of Oncology
Stefan Fröhling
Co-leader of the Rare Tumors TF DKFZ /NCT Heidelberg
Swetha Kannan
Cancer Research UK Cambridge Centre
Paolo Casali
Instituto Nazionale dei Tumori
Andri Papakonstantinou
Karolinska Institutet
Winan van Houdt
The Netherlands Cancer Institute
Benjamin Verret
Gustave Roussy
MEMBERS
7 Renowned European Cancer Centres Collaborate to Advance Cancer Care
Our commitment is to work on advanced cancer research for the benefit of patients
CANCER CORE EUROPE (CCE)