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 tumor board (VTB) to help the responsible clinician to discuss the best management of patients with VRT. This VTB has been established in an international setting that includes experts with outstanding expertise.
VTB 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 VTB 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 VTB system. For different reasons, we do not accept request from patients, families or other people. Second opinions are not within the scope of the VTB.
THE VRT-VTB PROJECT
The introduction of multidisciplinary treatment strategies constitutes a major advance to improve the survival of children with cancer. For more common childhood cancers, multimodal treatment is centrally coordinated by national or multinational cooperative groups and reference centers. Thus, an optimized orchestration of different therapeutic modalities is achieved with the best possible and risk-adapted stratification, scheduling and dosing. In addition, patients with particularly problematic cancers can be referred to experts, both for consultation and for treatment.
Most cooperative groups and reference centres offer medical/treatment guidelines to the collaborating centres, that address these highly specific questions. Central review of pathologic diagnosis is often offered and, in some instances, multidisciplinary evaluation of difficult cases is provided. This consulting activity is organized in different ways and may provide different levels of assistance depending on available local resources and organization. In some, but not all of these activities, the consultation takes place within an interdisciplinary tumour board orchestrated by the responsible study coordinators.
Based on these experiences, the constitution of officially recognized well-organized tumour boards is considered an essential component of excellence in paediatric cancer care, as they may coordinate a broad range of medical experts in different disciplines, allowing discussions and taking decisions on how to best care for every single patient with cancer and thereby assuring the quality of care.
While such initiatives have already been established for more common childhood cancers, such infrastructure is unavailable for very rare paediatric tumours (VRT). All paediatric cancers might be considered “rare”. However, for the “uncommon” rare paediatric tumours, the problems are not only infrequent but there is a complexity and heterogeneity of diagnosis. Indeed, the panel of diagnoses may include adult cancers, such as epithelial cancers, that rarely occur in the pediatric age (e.g. colon carcinoma, adenocarcinoma, melanoma etc.), and specific pediatric entities with extremely low incidence (e.g. pancreatoblastoma, pleuropulmonary blastoma etc.).
As a result, histopathological diagnosis may be uncertain and too unspecific, as the responsible physicians at a clinical center may never have treated a patient with this particular diagnosis before. Sometimes, it may also be difficult to find an expert on a particularly rare tumour – even on a national level. The extreme rarity of these diagnosis also leads to the obvious lack of scientific evidence about optimal treatment.
Thus, the experience in the management of VRT is low and may also impact the quality of care in these patients. . In contrast to more frequent tumour entities, no national study centers with the appropriate infrastructure has been established, and the visibility of very rare tumour study groups may be lower comparing to study groups of more common paediatric tumours.
Central consultation at reference centers is of critical importance for the care of patients with very rare cancers, and even more than for more frequent cancer types, in which clinical experience is more widespread.
Therefore, the establishment of a central virtual tumour board (VTB) is essential to create a network of experts in different tumours that can discuss the best management of patients with VRT. This VTB has to be established in an international setting that includes experts with outstanding expertise. Recent advances in telecommunication, such as modern broadband telemedicine technology, have made possible the establishment of such tumour boards. These technologies can overcome physical limits and may connect teams of specialists from different centers and even different nations or continents in a VTB.
This VTB can be contacted for requests regarding verification of diagnosis and optimal treatment. To ensure high quality of consultation, standard requirements for clinical consultation will be established, including pathology and surgical reports, imaging and clinical documentation.
The discussion, decision and clinical data on treatment and outcome will be documented centrally. Lastly, a tracking system for follow-up of each patient will be included, allowing for expanding the knowledge of outcomes in these rare tumours. Thus, a central VTB may become a formidable consultation platform to increase the experience of the experts and transfer knowledge to the paediatric oncology community.
The implementation of VTB has also been included in the EU Directive 2011/24/EU of patients’ rights in cross-border healthcare as a tool to increase the capacity of healthcare providers and fundamental to create a European Network of references.
VTB can provide medical advice, allowing the patient to receive appropriate treatment in the local Centre, but can also facilitate access to Centres with adequate expertise throughout Europe if a particular treatment is needed.
During the last decade, several national groups have been established that specifically focus on VRT in children and adolescents. These initiatives have increased the awareness of the problem of VRT. In June 2008 this led to the formation of a new cooperative group, the European Cooperative Study Group for Pediatric Rare Tumours (EXPeRT). The primary aim of this group is to empower the clinical and biological research on VRT by promoting collaboration between the founder national groups: Italy, France, United Kingdom, Poland and Germany. It is expected that additional European countries will join the group in the short term.
The establishment of a VRT-VTB is supported by the experience gained by EXPeRT in recent years and would represent an important step in the further development of EXPeRT activities. The establishment of the VRT-VTB in coordination with other EXPeRT activities will also provide a framework and possibly human resources to sustain this initiative after the conclusion of ExPO-r-Net.
REQUESTS FOR ADVICE
The VTB will accept requests from the physician who is responsible for the patient’s care or from the VRT national coordinator. The physician will go through an identification procedure.
Parents, patients or other, not professionals are not allowed to ask for advice and will be invited to submit their requests, however, through the responsible physician. This restriction is required in order to assure reliable source data and meaningful consultations processes.
Request concerning more frequent tumours will not be considered, as well as the general request for information or help.
Requests could be sent using a virtual consultation system (VCS) internet-based that allow sending patients information and upload reports and images.
Material has to be submitted, exclusively in English.
Important 
- Due to reasons of privacy protection and patient security, you will be asked to provide us with your institutional affiliation, institutional e-mail address, position, and specialty which we will then verify before enabling you to register your first query.
- The request of advice to the VRT board must be sent after written informed consent has been obtained from the patient, parent or legal guardian.
- The request of consent is left to the treating physician in agreement with the local rule.
- The treating physician will confirm in the consultation form that the patient/legal tutor has been informed about the advice request and have agreed on the procedure including the possibility for the Advisory Desk to store data, ask further data including follow up information and use data for future consultation and analysis.
In order for this service to be of greatest value to you, we ask you to be as thorough as possible in completing the registration form and make every effort to upload supporting information where relevant (eg radiology and pathology images).
Please bear in mind that the responsibility for patient care ultimately rests with the treating physician.
Request concerning more frequent tumours will not be considered, as well as the general request for information or help.
In case of a problem in accessing the VCS you can contact the central Advisory Desk in Dortmund
Tel: +49-231-953 21680
Email: expert-advice@klinikumdo.de
Acknowledgments:
The virtual consultation system is a deliverable of the ExPO-r-Net project that has been funded by The European Union in the framework of the Health Programme (2008-2013), grant 201312 07
The technological support to create the system has been provided by CINECA (Consorzio Interuniversitario del Nord-Est per il Calcolo Automatico) Casalecchio di Reno, Bologna Italy