What's new with the EXPeRT pediatric rare tumor group?
The year 2024 has been a busy one for the EXPeRT committee on many fronts. A monograph available in open access brought together, among others, several papers on genetic predispositions and rare pediatric tumors, data and standard of care recommendations on melanotic neuroectodermal tumor of infancy, olfactory neuroblastoma, and salivary gland carcinomas in children. Our COG colleagues joined us and shared their experiences about these rare tumors.
In addition, several European Standard Clinical Practice (ESCP) Guidelines are currently being finalised. They are already available on the EXPeRT Group website and the new ones will be added soon, and will concern melanomas in children, appendiceal NET, lung carcinomas, pseudopapillary pancreatic tumors, MNTI, myoepithelial carcinoma, etc.
Moreover, some recent papers have presented the EXPeRT experience in Pediatric Lung Carcinoma (PMID: 36087394), as well as Rare Tumor Registration in Low-Resource Countries (PMID: 39225960). As a reminder, a virtual consultation system for very rare tumors in children and adolescents is open to all clinicians (EJC Paediatric Oncology 3 (2024) 100137). Do not hesitate to use it in order to share your difficulties and try to get answers from our panelists (CPMS https://paedcan.ern-net.eu/e-health/).
This year also saw the launch of the PARTNER Study (PI: Padova), which is prospectively collecting clinical, therapeutic and outcome data on all European pediatric patients suffering from very rare tumors. In a few years' time, we'll be able to learn even more about these exceptional diseases.
All EXPeRT European various countries are therefore in the process of preparing themselves to take an active part to this prospective study.
Last but not least, the 9th International Symposium held in November in Tübingen (GE), on rare pediatric diseases (endocrine tumors, DICER-1 associated tumors, Ear nose and throat, pancreatic, NUT carcinomas …) and the challenges in their diagnosis and therapy was a great success!