ArticleNeuro-oncology practice2026
Pediatric high-grade gliomas in patients with neurofibromatosis type 1-A collaborative cohort study from the SIOPE HGG/DIPG working group.
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67 authors.
Michael KarremannDepartment of Pediatric and Adolescent Medicine and Mannheim Cancer Center (MCC), University Medical Center Mannheim, Medical Faculty Mannheim, Heidelberg University, Mannheim.ORCID https://orcid.org/0000-0002-9961-4752
Tabea GerdesDepartment of Pediatric and Adolescent Medicine and Mannheim Cancer Center (MCC), University Medical Center Mannheim, Medical Faculty Mannheim, Heidelberg University, Mannheim.
Gerrit H GielenDepartment of Neuropathology, DGNN Brain Tumor Reference Center, University of Bonn Medical Center, Bonn.
Robert KwiecienInstitute of Biostatistics and Clinical Research, Faculty of Medicine, University of Münster, Munster.
Thomas PerweinDivision of Pediatric Hematology and Oncology, Department of Pediatrics and Adolescent Medicine, Medical University of Graz, Graz.ORCID https://orcid.org/0000-0001-6952-1339
Marion HoffmannDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University Medical Center Goettingen, Göttingen.
Amedeo A AziziDivision of Neonatology, Pediatric Intensive Care and Neuropediatrics, Department of Pediatrics and Adolescent Medicine, Comprehensive Center for Pediatrics, Comprehensive Cancer Centre, Medical University of Vienna, Vienna.ORCID https://orcid.org/0000-0002-1347-6644
Florian BaborDepartment of Pediatric Hematology and Oncology, University Hospital Düsseldorf, Dusseldorf.
Carla Barrios-BussmannDepartment of Pediatric and Adolescent Medicine and Mannheim Cancer Center (MCC), University Medical Center Mannheim, Medical Faculty Mannheim, Heidelberg University, Mannheim.
Lars BehrensDiagnostic and Interventional Neuroradiology, Faculty of Medicine, University of Augsburg and Neuroradiological Reference Center for the pediatric brain tumor (HIT) studies of the German Society of Pediatric Oncology and Hematology (GPOH), Augsburg.
Martin BeneschDivision of Pediatric Hematology and Oncology, Department of Pediatrics and Adolescent Medicine, Medical University of Graz, Graz.
Luca BerteroPathology Unit, Department of Medical Sciences, University of Torino and Città della Salute e della Scienza University Hospital, Torino.ORCID https://orcid.org/0000-0001-9887-7668
Veronica BiassoniPediatric Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milan.ORCID https://orcid.org/0000-0003-1486-1736
Brigitte BisonDiagnostic and Interventional Neuroradiology, Faculty of Medicine, University of Augsburg and Neuroradiological Reference Center for the pediatric brain tumor (HIT) studies of the German Society of Pediatric Oncology and Hematology (GPOH), Augsburg.
Francesca R ButtarelliDepartment of Radiological, Oncological and Anatomo-Pathological Sciences, University Sapienza of Rome, Rome.
Gabriele CalaminusDepartment of Pediatric Hematology and Oncology, University Hospital of Bonn, Bonn.ORCID https://orcid.org/0000-0002-7893-7982
Alexander ClaviezDepartment of Pediatrics, University Hospital Kiel, Kiel.
Felix DistelmaierDepartment of General Pediatrics, Neonatology and Pediatric Cardiology, University Hospital Düsseldorf, Dusseldorf.ORCID https://orcid.org/0000-0001-8460-3738
Martin EbingerDepartment of Pediatrics, University Hospital Tübingen, Tübingen.
Moatasem ElayadiChildren Cancer Hospital of Egypt, and National Cancer Institute, Cairo University, Cairo.
Jana ErnstDepartment of Pediatric Oncology, University Hospital Jena, Jena.
Matthias EyrichDepartment of Pediatrics, University Hospital Würzburg, Würzburg.ORCID https://orcid.org/0000-0002-8099-5903
Gudrun FleischhackPediatrics III, University Hospital Essen, Essen.
Carsten FriedrichDepartment of Pediatrics and Pediatric Hematology/Oncology, University Children's Hospital, Carl von Ossietzky Universität Oldenburg, Klinikum Oldenburg AöR, Oldenburg.
Lea L FrikerDepartment of Neuropathology, DGNN Brain Tumor Reference Center, University of Bonn Medical Center, Bonn.
Maria Luisa GarreNeuro-Oncology Unit, IRCCS Istituto Giannina Gaslini, Genoa.
Nicolas U GerberDepartment of Oncology, University Children's Hospital, Zurich.
Johannes GojoDivision of Neonatology, Pediatric Intensive Care and Neuropediatrics, Department of Pediatrics and Adolescent Medicine, Comprehensive Center for Pediatrics, Comprehensive Cancer Centre, Medical University of Vienna, Vienna.ORCID https://orcid.org/0000-0002-8113-3416
Darren HargravePediatric Oncology Unit, University College London Great Ormond Street Institue of Child Health, London.
Svenja HäuserDepartment of Pediatric and Adolescent Medicine and Mannheim Cancer Center (MCC), University Medical Center Mannheim, Medical Faculty Mannheim, Heidelberg University, Mannheim.
Pablo Hernaiz-DrieverCharité-Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Department of Pediatric Oncology and Hematology, German HIT-LOGGIC-Registry for Low Grade Glioma in Children and Adolescents, Berlin.
Stefan HolmDepartment of Pediatric Hematology and Oncology, Astrid Lindgrens Children's Hospital, Karolinska University Hospital, Stockholm.
Marcus JakobDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, University Hospital Regensburg.
Stephanie KnirschOlgahospital, Center of Pediatric, Adolescent and Womenś Medicine, Department of Pediatrics 5 (Hematology, Oncology and Immunology), Klinikum Stuttgart, Germany.
Christian KratzDepartment of Pediatric Hematology and Oncology, Hannover Medical School, Hannover.
Jeanne Marie KrischerDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University Medical Center Goettingen, Göttingen.
Caspar KühnölDepartment of Pediatrics, University Medical Center Halle, Halle.
Ella KumirovaMorozov Children's City Clinical Hospital of the Moscow City Healthcare Department Moscow, Russia and Pyrogov Russian National Research Medical University, Moscow.
Maura MassiminoPediatric Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milan.ORCID https://orcid.org/0000-0002-5506-2001
Maria VinciHematology/Oncology, Cell Therapy, Gene Therapies and Hemopoietic Transplant, IRCCS Bambino Gesù Children's Hospital, Rome.ORCID https://orcid.org/0000-0002-7952-6771
Lisethe MeijerDepartment of Neuro-Oncology, Princess Maxima Center for Pediatric Oncology, Utrecht.
Markus MetzlerDepartment of Pediatrics and Adolescent Medicine, University Hospital Erlangen, Erlangen.
Claudia MilanaccioNeuro-Oncology Unit, IRCCS Istituto Giannina Gaslini, Genoa.
Andres Morales La MadridPediatric Cancer Center Barcelona, Hospital Sant Joan de Déu, Barcelona.
Giovanni MoranaDepartment of Neuroscience, Neuroradiological Unit, University of Torino, Azienda Ospedaliera Città della Salute e della Scienza Hospital, Torino.ORCID https://orcid.org/0000-0001-8707-5969
Gunther NussbaumerDivision of Pediatric Hematology and Oncology, Department of Pediatrics and Adolescent Medicine, Medical University of Graz, Graz.
Gianluca PiccoloNeuro-Oncology Unit, IRCCS Istituto Giannina Gaslini, Genoa.
Bianca PolloNeuropathology Unit, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan.ORCID https://orcid.org/0000-0002-5523-4256
Guido ReifenbergerInstitute of Neuropathology, Medical Faculty, Heinrich Heine University and University Hospital Düsseldorf, Dusseldorf.
Christian ReimannDepartment of Pediatrics and Adolescent Medicine, Ulm University Medical Center, Ulm.
Thorsten RosenbaumDepartment of Pediatrics, Sana Kliniken Duisburg, Wedau Kliniken, Duisburg.
Elisabetta SchiavelloPediatric Unit, Fondazione IRCCS Istituto Nazionale dei Tumori di Milano, Milan.ORCID https://orcid.org/0000-0002-8049-7445
Jaroslav SterbaDepartment of Pediatric Oncology, University Hospital Brno, Brno.
Dominik SturmHopp Children's Cancer Center Heidelberg (KiTZ), Heidelberg.ORCID https://orcid.org/0000-0003-0250-1696
Elwira SzychotPediatric Oncology Unit, University College London Great Ormond Street Institue of Child Health, London.
Chiara ValentiniDepartment of Radiotherapy and Radiation Oncology, Faculty of Medicine, University Hospital Carl Gustav Carus, Technische Universität Dresden, Dresden.
Stefano Gabriele ValleroPediatric Onco-Hematology, Regina Margherita Children's Hospital, Città della Salute e della Scienza University Hospital, Torino.
Eunike Velleuer-CarlbergCentre for Child and Adolescent Health, HELIOS Klinikum, Krefeld.
Miriam van BuirenDepartment of Pediatric Hematology, Oncology and Stem Cell Transplantation, Children's Hospital, Medical Center, Faculty of Medicine, University of Freiburg, Freiburg.
Angela MastronuzziHematology/Oncology, Cell Therapy, Gene Therapies and Hemopoietic Transplant, IRCCS Bambino Gesù Children's Hospital, Rome.ORCID https://orcid.org/0000-0002-4408-2373
Dannis van VuurdenDepartment of Neuro-Oncology, Princess Maxima Center for Pediatric Oncology, Utrecht.
André O von BuerenDivision of Pediatric Oncology and Hematology, Department of Pediatrics, Gynecology and Obstetrics, University Hospital of Geneva, Geneva.
Maria WieseDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University Medical Center Goettingen, Göttingen.
Claudia ZinkeDepartment of Pediatric Hematology and Oncology, University Hospital Dresden, Dresden.
Jozef ZlochaDepartment of Pediatrics, Medical University Lausitz Carl Thiem, Cottbus, Germany.
Torsten PietschDepartment of Neuropathology, DGNN Brain Tumor Reference Center, University of Bonn Medical Center, Bonn.
Christof M KrammDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University Medical Center Goettingen, Göttingen.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: We assessed clinical features, treatment, and survival of pediatric patients with neurofibromatosis type 1 (NF1) with high-grade glioma (HGG). Methods: Patients from this retrospective cohort study were identified through an international collaborative effort by the SIOPE HGG/DIPG working group. NF1 was diagnosed based on clinical presentation and confirmed by either a pathogenic germline Results: We identified 29 pediatric patients with NF1-associated HGG. Median age at diagnosis of HGG was 11 years. All but 1 tumor arose outside the optic pathway and included circumscribed and diffuse HGG. Molecular analysis in a subset of tumors identified an enrichment of alterations in Conclusions: NF1-associated HGGs behave as aggressively as their sporadic counterparts. The relevance of delaying radiotherapy until the time of progression and adjuvant MEK inhibitor treatment needs further investigation.
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childrenhigh-grade gliomaMEK inhibitorNF1radiotherapy
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