ReviewERN GENTURIS tumour surveillance guidelines for individualswith neurofibromatosis type 1Charlotte CartoD.Gareth Evans Ignacio BlancoReinhard E Friedrich,RosaleE.Femer,Said Farschtschi Hector SvadorAmedeo A.Azizi Victor Mautner,Cloas RohSirkku Petonen,Stavos StivarosEric Legiusand Rianne OostenbrinkOn behalf ofathe ERN GENTURIS NF1 Tumour Management Guideline GroupPLaboratory for Neurofibromatosis Research,Department of Human Genetics,University of Leuven,KU Leuven,BelgiumManchester Centre for Genomic Medicine,Division of Evolution and Genomic Sciences,University of Manchester,MAHSC,St Mary'sHospital,Manchester University Hospitals NHS Foundation Trust,Manchester,UKClinical Genetics Department,Hospital Germans Trias I Pujol,Barcelona,SpaindUniversitatsklinikum Hamburg-Eppendorf,Hamburg.GermanyNeurofibromatosis Centre,Department of Neurology,Guy's St Thomas'NHS Foundation Trust,London,UKSant Joan de Deu,Barcelona Children's Hospital,Barcelona,Spain9Division of Neonatology,Pediatric Intensive Care and Neuropediatrics,Department of Pediatrics and Adolescent Medicine,MedicalUniversity of Vienna,AustriaNF Kinder,Austria'University of Turku and Turku University Hospital,Turku,FinlandiSahlgrenska University Hospital and Sahlgrenska Academy.University of Gothenburg.SwedenAcademic Unit of Paediatric Radiology,Royal Manchester Children's Hospital,Central Manchester University Hospitals NHS FoundationTrust,Manchester,UKGeoffrey Jefferson Brain Research Centre,Northern Care Alliance NHS Group,University of Manchester,Manchester Academic HealthScience Centre,Manchester,UKUniversity Hospital Leuven,Department of Human Genetics,University of Leuven,KU Leuven,BelgiumENCORE-NF1 Expertise Center,ErasmusMC-Sophia,Rotterdam,the NetherlandsSummaryeCinicalMedicineBackground Neurofibromatosis type 1(NF1)is a multisystem genetic disorder,predisposing development of benign202356:101818and malignant tumours.Given the oncogenic potential,long-term surveillance is important in patients with NF1.Published Online xxxProposals for NF1 care and its specific manifestations have been developed,but lack integration within routinehttps//doi.org/10.care.This guideline aims to assimilate available information on NF1 associated tumours (based on evidence and/1016小.ecnm.2022101818or expert opinion)to assist healthcare professionals in undertaking tumour surveillance of NF1 individuals.Methods By comprehensive literature review,performed March 18th 2020,guidelines were developed by a NF1 expertgroup and patient representatives,conversant with clinical care of the wide NF1 disease spectrum.We used amodified Delphi procedure to overcome issues of variability in recommendations for specific(national)health caresettings,and to deal with recommendations based on indirect (scarce)evidence.Findings We defined proposals for personalised and targeted tumour management in NF1,ensuring appropriate carefor those in need,whilst reducing unnecessary intervention.We also incorporated the tumour-r
