ERN PaedCan: Strengthening Cross-Border Care for Children and Adolescents with Retinoblastoma in Europe

Among them, the ERN PaedCan network enables pediatric and adolescent cancer specialists from across Europe to discuss clinical cases, share their expertise, and propose the most appropriate diagnostic approaches and the best available treatment options.

Within the ERN PaedCan, Institut Curie coordinates and participates in multidisciplinary case discussions with retinoblastoma experts from across the European Union. These meetings are held every two weeks via the Clinical Patient Management System CPMS 2.0, a secure and anonymized digital platform designed to support cross-border clinical collaboration.

Offering the best expertise to every child, everywhere in Europe

Through CPMS 2.0, specialists in pediatric oncology, ophthalmology, radiology, genetics, pathology, and other disciplines can review complex cases together, share expertise, and discuss optimal management strategies. All patient data are fully anonymized, ensuring strict compliance with European data protection and confidentiality regulations.

By sharing expertise across borders, providing highly specialized, patient-centered recommendations are provided as well as optimizing care for children with retinoblastoma.

This collaborative approach helps to reduce the need for patients and families to travel by ensuring that each case is discussed thoroughly and with sufficient time to explore diagnostic and therapeutic options within the patient’s country of origin, supported by expert advice.
Only when local solutions are considered insufficient, a referral to the nearest or most appropriately equipped specialized center is made. This model helps lower logistical and emotional burdens for children and their families, while ensuring that clinical decisions are made jointly with the shared objective of delivering the most appropriate, personalized, and effective care.

This biweekly European collaboration with other medical centers in EU + Norways  reflects Institut Curie’s ongoing commitment to ensures that every child with retinoblastoma has access to the best possible expertise - wherever they are.

In addition, doctors at Institut Curie’s physicians contribute to the work of the ERN Paed Can by participating in the drafting of European guidelines in the fields of retinoblastoma, brain tumors, neuroblastomas, rhabdoid tumors, rare childhood cancers, and genetic predispositions to pediatric cancers.
 

Placing Patients and Families at the Centre

Patient and family representation is a cornerstone of ERN PaedCan. Childhood Cancer International Europe (CCI Europe) and the European Patient Advocacy Group (ePAG), an initiative of EURORDIS – Rare Diseases Europe, ensure that the patient voice is embedded throughout the network’s development and governance.

Patients cannot access ERNs directly. However, with the patient’s consent and in accordance with national health regulations, healthcare providers may exchange clinical information and consult the relevant ERN members to support optimal patient care.
Through elected representatives and affiliated organisations, parents and survivors actively contribute to shaping a healthcare system that responds effectively to their needs.