The experience in the management of very rare tumours (VRT) is limited and may impact the quality of care in these patients. We believe that one way to overcome this problem is a creation of networks and a possibility to share experience and knowledge.
We have established a virtual consultation system within the Clinical Patient Management System (CPMS) of the European Reference Network on Paediatric Cancer (ERN PaedCan) to help the responsible clinician to discuss the best management of patients with VRT. This virtual consultation system has been established in an international setting that includes experts with outstanding expertise.
The virtual consultation system can provide medical advice, allowing the patient to receive appropriate treatment in the local Centre, but can also facilitate direct communication with Centres with adequate expertise throughout Europe, if a particular treatment is needed.
The virtual consultation system can be contacted by physicians for requests regarding verification of diagnosis and optimal treatment. To ensure high quality of consultation, a set of data (i.e. clinical summary, pathology and radiology reports, etc.) is required along with the patient’s/family’s consent for consultation.
Please be aware that only the patient’ responsible clinician will be allowed to use the virtual consultation system. For different reasons, we do not accept request from patients, families or other people. Second opinions are not within the scope of the virtual consultation system.
Furthermore, the EXPeRT group conducts various research projects on very rare tumors in childhood, which aim to optimize diagnostics and treatment. An overview of respective scientific publications can be found here. Also, European Standard Clinical Practice (ESCP) guidelines are published to harmonize diagnostics and treatment for very rare tumors in childhood across Europe.