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The document explains the Partner Project (PARTN-ER) goals, linking national registries and enabling access by EU health care providers through potential integration with virtual consultation. It further frames the clinical context, emphasizing the heterogeneity and low patient numbers that limit trials, and sets an objective to provide internationally recognized recommendations for diagnosis and treatment.",{"@graph":69,"@context":122},[70,84,105],{"@type":71,"itemListElement":72},"BreadcrumbList",[73,77,79,82],{"item":74,"name":75,"@type":76,"position":8},"https://docshare.wps.com","Home","ListItem",{"item":78,"name":9,"@type":76,"position":14},"https://docshare.wps.com/document/",{"item":80,"name":35,"@type":76,"position":81},"https://docshare.wps.com/document/healthcare/",3,{"item":83,"name":65,"@type":76,"position":19},"https://docshare.wps.com/document/consensus-recommendations-for-nasopharyngeal-carcinoma-in-children-and-adolescents-final-version-v-9/514184/",{"url":83,"name":65,"@type":85,"image":86,"author":91,"headline":65,"publisher":94,"fileFormat":97,"inLanguage":63,"description":67,"dateModified":98,"datePublished":99,"encodingFormat":97,"isAccessibleForFree":100,"interactionStatistic":101},"DigitalDocument",{"url":87,"@type":88,"width":89,"height":90},"https://docshare.wps.com/thumbnails/consensus-recommendations-for-nasopharyngeal-carcinoma-in-children-and-adolescents-final-version-v-9/514184.png","ImageObject",300,407,{"name":92,"@type":93},"asba","Person",{"url":74,"name":95,"@type":96},"DocShare","Organization","application/pdf","2026-10-29","2026-10-06",true,{"@type":102,"interactionType":103,"userInteractionCount":81},"InteractionCounter",{"@type":104},"ViewAction",{"@type":106,"mainEntity":107},"FAQPage",[108,114,118],{"name":109,"@type":110,"acceptedAnswer":111},"What is the aim of PARTN-ER in relation to pediatric very rare tumors?","Question",{"text":112,"@type":113},"PARTN-ER aims to create a European Registry for children and adolescents with very rare tumors by linking existing national registries and providing registry coverage for countries that do not yet have one.","Answer",{"name":115,"@type":110,"acceptedAnswer":116},"Why are evidence-based treatment guidelines difficult for pediatric very rare tumors?",{"text":117,"@type":113},"The low number of patients makes clinical trials difficult or impossible, which limits the development of evidence-based treatment guidelines and often leads to individualized treatment.",{"name":119,"@type":110,"acceptedAnswer":120},"What is the objective regarding nasopharyngeal carcinoma in children and adolescents?",{"text":121,"@type":113},"The objective is to establish internationally recognized recommendations for the diagnosis and treatment of children and adolescents with nasopharyngeal carcinoma, as a deliverable of the PARTN-ER project.","https://schema.org",{"og:url":83,"og:type":124,"og:title":65,"og:site_name":95,"og:description":67},"article",{"robots":126,"canonical":83},"index,follow",{"doc_id":128,"site_id":62},514184,1792159703,{"code":4,"msg":5,"data":131},{"doc_id":128,"user_id":132,"nickname":92,"user_avatar":133,"doc_module":4,"category_id":34,"category_name":35,"doc_title":65,"doc_description":67,"doc_content":134,"file_id":135,"file_url":136,"file_type":137,"file_size":138,"view_count":81,"is_deleted":4,"is_public":8,"is_downloadable":8,"audit_status":8,"page_count":139,"language":140,"language_code":63,"site_id":62,"html_lang":63,"table_of_contents":141,"faqs":142,"seo_title":143,"seo_description":67,"update_tm":144,"read_time":145,"preview_page_count":4},3985747872567,"https://ap-avatar.wpscdn.com/davatar_276721f389ce27ea32af1340a28f341c","Consensus Recommendations for  \nNasopharyngeal carcinoma in children and adolescents  \nFinal version (V. 9)  \nThe Partner Project:  \nPARTN-ER aims to create a European Registry dedicated to children and adolescents with very rare tumors (VRT) linking existing national registries and to provide a registry for those countries not already having a registry for VRT in place. The European Registry will be an essential part of the activity of the VRT subnetwork part of the ERN PaedCan. The possibility to link the registry with a virtual consultation system and the elaboration of diagnostic/treatment recommendations will create a platform that can be easily accessed by EU Health care providers. The increasing expertise in VRT based on the data collected in the European registry will increase the capacity to provide international consultation and define standard of treatment recommendations. This will ultimately result in improved patients’ care and reduce currently existing inequalities in cancer outcome across EU member states.  \nDISCLAIMER:  \nThese ESCP guidance documents were produced by the relevant tumour group or specialist committee as recommendations on current best practice. The ESCP guidance documents are not clinical trial protocols.  \nThe interpretation and responsibility of the use of ESCP guidance documents lies fully with the user who retains full responsibility for the use of these guidance documents and his actions and (treatment) decisions based thereon, such as, but without limitation thereto: checking and prescribing certain doses, checking prescriptions, etc. A user should never base its decision solely on the content of these guidance documents and should always check any other relevant medical information that is available and make appropriate use of all relevant medical information.  \nThese guidance documents have been made publicly available by SIOP Europe – the European Society of Paediatric Oncology and the European Reference Network for Paediatric Oncology (ERN PaedCan) . It is the responsibility of the user who downloads these documents to make sure that:  \n· their use within the Paediatric Clinical Unit / Hospital is approved according to the local clinical governance procedures.  \n· appropriate document control measures are in place to ensure that the most up to date locally approved versions are considered.  \n· any anomalies or discrepancies within the documents are immediately brought to the attention of the relevant special interest group chair and the European Clinical Study Group who has developed the ESCP guidance document.  \nEvery care has been taken whilst preparing these documents to ensure that they are free of errors. Nonetheless, SIOP Europe and ERN PaedCan cannot be held liable for possible errors or mistakes in these guidance documents, nor can SIOP Europe and ERN PaedCan be held liable for any kind of damage resulting out of the use of these guidance documents.  \nSummary:  \nPediatric very rare tumors (VRT) constitute an extremely heterogeneous group of neoplasms. Some of them are typical of pediatric age, while other more commonly arise during adulthood and only rarely develop in children. Using the definition any solid malignancy or borderline tumor characterized by an annual incidence \u003C2/million children \u003C18 years old and/or not already considered in other clinical trials, the European Cooperative Study group for Pediatric Rare Tumors (EXPeRT) has initially identified a number of pediatric VRT (1) . Due to the low number of patients it is very difficult – or even impossible-to conduct clinical trials on them, and this makes it hard to arrive to evidence-based treatment guidelines. As a consequence, the treatment of patient with VRT is often individualized.  \nBackground:  \nNasopharyngeal carcinoma (NPC) is a rare pediatric tumor, accounting for 1% of childhood malignancies 1,2 . NPC in children is often diagnosed during adolescence, and usually presents in advanced local disease 3. Dista","cbCaitLhxhLw27fs","https://ap.wps.com/l/cbCaitLhxhLw27fs","pdf",1006333,55,"English","# Methodology\n# Background\n# Recommendations\n## Initial tumor assessment\n## Diagnosis","[{\"question\":\"What is the aim of PARTN-ER in relation to pediatric very rare tumors?\",\"answer\":\"PARTN-ER aims to create a European Registry for children and adolescents with very rare tumors by linking existing national registries and providing registry coverage for countries that do not yet have one.\"},{\"question\":\"Why are evidence-based treatment guidelines difficult for pediatric very rare tumors?\",\"answer\":\"The low number of patients makes clinical trials difficult or impossible, which limits the development of evidence-based treatment guidelines and often leads to individualized treatment.\"},{\"question\":\"What is the objective regarding nasopharyngeal carcinoma in children and adolescents?\",\"answer\":\"The objective is to establish internationally recognized recommendations for the diagnosis and treatment of children and adolescents with nasopharyngeal carcinoma, as a deliverable of the PARTN-ER project.\"}]","Consensus Recommendations for Nasopharyngeal Carcinoma in Children and Adolescents - Final version (V. 9) | PDF",1791297435,139]