SIOPEN – E-health Tools and Support for Clinical Trials in Europe
Running clinical trials for rare cancers across different countries in Europe is challenging. It requires strong digital tools that respect privacy laws and work across borders. That’s why we need advanced e-health systems that can safely collect and manage patient data and support doctors in making treatment decisions.
These systems include:
- Electronic health records
- Digital tools for managing trials and clinical data
- Online platforms for sharing medical information between hospitals
- E-consent forms for patients
- Decision support tools for healthcare professionals
MONALISA will build on two major existing platforms: SIOPEN/BIOPORTAL and the R2 platform. These platforms will be securely connected using privacy-preserving technologies.
The SIOPEN/BIOPORTAL (ClinicalTrials.gov ID: NCT05192980) is an international registry that collects data from patients with peripheral neuroblastic tumors across multiple countries in the SIOPEN network. It’s linked to a virtual biobank, which stores biological samples to support research.
This effort follows the EU’s Digital Strategy and Digital Services Act, aiming to create a safe, transparent, and innovative digital environment for healthcare in Europe.
About SIOPEN - International Society of Paediatric Oncology Europe – Neuroblastoma:
The purpose of the Association is to perform and facilitate clinical, translational and basic research for children and adolescents with neuroblastoma in European countries as well as worldwide in order to improve the outcome of these patients. Learn more about SIOPEN here.
The Cancer Mission Diagnosis and Treatment (Diagnostics) Cluster
The MONALISA project is part of the EU Cancer Mission Diagnosis and Treatment (Diagnostics) Cluster, alongside four other EU-funded projects: RESOLVE, PREMIO COLLAB, ENDEAVOR, and DeFINITIVE.
The European Union has brought together these five oncology projects — spanning both adult and childhood cancers — to advance early detection, personalized medicine, innovative diagnostics, and recurrence monitoring with minimally invasive techniques. By leveraging advanced technologies and collaborative frameworks, the Cluster aims to improve cancer outcomes across Europe.
MONALISA makes a distinct contribution by focusing on childhood cancer, with the focus on the diagnosis of neuroblastoma.
The Cluster’s primary objective is to develop non-invasive (or minimally invasive) cancer screening and detection methodologies. These integrated diagnostic approaches combine imaging, tissue analysis, liquid biopsy analysis, and interpretation of clinical biomarkers to enhance early diagnosis and treatment or relapse monitoring.
In addition to scientific research, the Cluster members collaborate closely to support and strengthen the work of all participating projects. Each project leads a specific area of focus ("strand of work") and engages the other members as needed. The common strands of work include:
- Data management
- Common work plan for scientific collaboration
- Citizen engagement
- Inequalities in access to care / Childhood cancer
- Communication and dissemination
In its first year, the MONALISA team has taken a leading role in coordinating the Cluster’s activities and, together with DeFINITIVE, co-organised the 1st Cluster Meeting — a key milestone in fostering collaboration and knowledge exchange.
To advance the EU Cancer Mission, Clusters focus on four key priorities: supporting mission objectives, creating added value through collaboration, maximizing the impact of EU funding, and establishing a strong policy feedback loop. These efforts ensure that research translates into meaningful outcomes for patients and society.
With the goal of saving three million lives by 2030, the Horizon Europe Cancer Mission drives progress through collaborative projects. By aligning research, innovation, and policy, it empowers regional and national authorities to take action. The mission is structured around four key objectives: Understanding Cancer, Prevention, Early Detection, and Improving Quality of Life. For more details, please visit: EU Mission: Cancer - European Commission.
