ArticleJournal of neuro-oncology2017
Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease.
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Article in Journal of neuro-oncology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
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34citing papers in PubMed, 1 pooled it
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Who cites it
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Reirradiation for diffuse intrinsic pontine glioma: a systematic review and meta-analysis.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2019Pooled it
- Adult Thalamic Diffuse Midline Glioma, H3 K27-Altered, WithJournal of medical cases · 2026Article
- Corticosteroid use in pediatric neuro-oncology symptom management: A rapid review.Neuro-oncology practice · 2026Review
- Tumor inflammation-associated neurotoxicity in children with diffuse intrinsic pontine glioma receiving B7-H3-targeting CAR T cells on BrainChild-03.Neuro-oncology practice · 2026Article
- Botulinum Therapy for Pain Caused by Spasticity in Advanced Stages of Brain Tumor in Adolescents: A Case Report.Clinical medicine insights. Case reports · 2025Article
- Clinical outcome, radiological findings, and genetic features of IDH-mutant brainstem glioma in adults.Acta neurochirurgica · 2024Article
- Safety and pharmacokinetics of ONC201 (dordaviprone) administered two consecutive days per week in pediatric patients with H3 K27M-mutant glioma.Neuro-oncology · 2024Article
- Current state of rare disease registries and databases in Australia: a scoping review.Orphanet journal of rare diseases · 2023Article
- Pediatric Diffuse Midline Gliomas: An Unfinished Puzzle.Diagnostics (Basel, Switzerland) · 2022Review
- Repurposing Vandetanib plus Everolimus for the Treatment ofCancer discovery · 2022Article
- Adult brainstem glioma: a multicentre retrospective analysis of 47 Italian patients.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2021Article
- Clinical experience of convection-enhanced delivery (CED) of carboplatin and sodium valproate into the pons for the treatment of diffuse intrinsic pontine glioma (DIPG) in children and young adults after radiotherapy.International journal of clinical oncology · 2021Article
- Long-term survival of a patient with diffuse midline glioma in the pineal region: A case report and literature review.Surgical neurology international · 2021Article
- MR imaging features of diffuse intrinsic pontine glioma and relationship to overall survival: report from the International DIPG Registry.Neuro-oncology · 2020Article
- Retrospective analysis of the clinical and radiological features of 94 consecutive DIPGs patients to investigate the factors determining the development of hydrocephalus and its impact on clinical status and survival.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2020Observational
- Therapeutic Efficacy of Immune Stimulatory Thymidine Kinase and fms-like Tyrosine Kinase 3 Ligand (TK/Flt3L) Gene Therapy in a Mouse Model of High-Grade Brainstem Glioma.Clinical cancer research : an official journal of the American Association for Cancer Research · 2020Article
- Addition of Multimodal Immunotherapy to Combination Treatment Strategies for Children with DIPG: A Single Institution Experience.Medicines (Basel, Switzerland) · 2020Article
- Retrospective analysis on the consistency of MRI features with histological and molecular markers in diffuse intrinsic pontine glioma (DIPG).Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2020Article
- The 100 most-cited articles about diffuse intrinsic pontine glioma: a bibliometric analysis.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2019Article
- Diagnostics and treatment of diffuse intrinsic pontine glioma: where do we stand?Journal of neuro-oncology · 2019Article
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Authors and funding
72 authors.
Sophie E M Veldhuijzen van ZantenDepartment of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands. s.veldhuijzen@vumc.nl.ORCID http://orcid.org/0000-0002-3888-0977
Joshua BaughDepartment of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
Brooklyn ChaneyDepartment of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
Dennis De Jongh2TCI B.V., Breda, The Netherlands.
Esther Sanchez AliagaDepartment of Radiology and Nuclear Medicine, VU University Medical Center, Amsterdam, The Netherlands.
Frederik BarkhofDepartment of Radiology and Nuclear Medicine, VU University Medical Center, Amsterdam, The Netherlands.
Johan NoltesKPMG, Amstelveen, The Netherlands.
Ruben De WolfKPMG, Amstelveen, The Netherlands.
Jet Van DijkYellow Research B.V., Amsterdam, The Netherlands.
Antonio CannarozzoTrasferimento Tecnologico (TTO), Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy.
Carin M Damen-KorbijnDutch Childhood Oncology Group (DCOG), The Hague, The Netherlands.
Jan A LieverstDutch Childhood Oncology Group (DCOG), The Hague, The Netherlands.
Niclas ColditzDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University of Göttingen, Göttingen, Germany.
Marion HoffmannDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University of Göttingen, Göttingen, Germany.
Monika Warmuth-MetzDivision of Pediatric Neurooncology, German Cancer Research Center (DKFZ) Heidelberg, Heidelberg, Germany.
Brigitte BisonDivision of Pediatric Neurooncology, German Cancer Research Center (DKFZ) Heidelberg, Heidelberg, Germany.
David T W JonesInstitute of Neuropathology, University of Bonn Medical Center, Bonn, Germany.
Dominik SturmInstitute of Neuropathology, University of Bonn Medical Center, Bonn, Germany.
Gerrit H GielenInstitute of Neuropathology, University of Bonn Medical Center, Bonn, Germany.
Chris JonesDivisions of Molecular Pathology and Cancer Therapeutics, The Institute of Cancer Research, Sutton, UK.
Esther HullemanNeuro-oncology Research Group, VU University Medical Center, Amsterdam, The Netherlands.
Raphael CalmonUniversité Paris-Descartes, Hôpital Necker-Enfants malades, Paris, France.
David CastelUMR 8203 CNRS, Gustave Roussy, Paris-Saclay University, Villejuif, France.
Pascale VarletService de Neuropathologie, Hôpital Sainte-Anne, Paris, France.
Géraldine GiraudInstitut Gustave Roussy, Villejuif, France.
Irene SlavcDepartment of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria.
Stefaan Van GoolImmuno-oncology Centre Köln, Cologne, Germany.
Sandra JacobsDepartment of Pediatric Hematology and Oncology, University Hospitals Leuven, Leuven, Belgium.
Filip Jadrijevic-CvrljeDepartment of Oncology and Hematology, Children's Hospital Zagreb, Zagreb, Croatia.
David SumerauerDepartment of Pediatric Hematology and Oncology, 2nd Faculty of Medicine, University Hospital Motol, Charles University, Prague, Czech Republic.
Karsten NysomPediatrics and Adolescent Medicine, University Hospital Rigshospitalet, Copenhagen, Denmark.
Virve PentikainenDivision of Hematology-Oncology and Stem Cell Transplantation, Children's Hospital, Helsinki University Hospital, Helsinki, Finland.
Sanna-Maria KivivuoriHelsinki University Hospital (HUH) and HUH Children and Adolescents, Helsinki, Finland.
Pierre LeblondPediatric Oncology Unit, Oscar Lambret Comprehensive Cancer Center, Lille, France.
Natasha Entz-WerleService de Pédiatrie Onco-Hématologie, CHRU Hautepierre Strasbourg, Strasbourg, France.
Andre O von BuerenPediatric Oncology and Hematology, Department of Pediatrics, University Hospital of Geneva, Genève, Switzerland.
Antonis KattamisFirst Department of Pediatrics, National and Kapodistrian University of Athens, 'Aghia Sofia' Children's Hospital, Athens, Greece.
Darren R HargravePaediatric Oncology Unit, Great Ormond Street Hospital (GOSH), London, UK.
Péter HauserSecond Department of Pediatrics, Semmelweis University, Budapest, Hungary.
Miklos GaramiSecond Department of Pediatrics, Semmelweis University, Budapest, Hungary.
Halldora K ThorarinsdottirPediatric Hematology-Oncology, The Children's Hospital, Reykjavik, Iceland.
Jane PearsDepartment of Paediatric Oncology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland.
Lorenza GandolaPediatric Radiotherapy Unit, Department of Diagnostic Radiology and Radiotherapy, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy.
Giedre RutkauskieneDepartment of Pediatric Oncology and Hematology, Hospital of Lithuanian University of Health Sciences Kaunas Clinic, Kaunas, Lithuania.
Geert O JanssensDepartment of Radiation Oncology, University Medical Center Utrecht and Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.
Ingrid K TorsvikDepartment of Pediatrics, Division of Oncology/Hematology, Haukeland University Hospital, Mons, Norway.
Marta Perek-PolnikDepartment of Oncology, The Children's Memorial Health Institute, Warsaw, Poland.
Maria J Gil-da-CostaPediatric Hemathology and Oncology Division, University Hospital S. João Alameda Hernani Monteiro, Porto, Portugal.
Olga ZheludkovaDepartment of Neuro-Oncology, Russian Scientific Center of Radiology, Moscow, Russia.
Liudmila ShatsDepartment of Children Oncology and Haematology, City Clinical Hospital #31 of Saint-Petersburg, St.-Petersburg, Russian Federation.
Ladislav DeakDepartment of Pediatric Oncology/ Haematology, Children University Hospital, Kosice, Slovakia.
Lidija KitanovskiDepartment of Pediatrics, Division of Haematooncology, University Medical Center Ljubljana, Ljubljana, Slovenia.
Ofelia CruzDepartment of Pediatric Hematology and Oncology, Hospital Sant Joan de Déu, Barcelona, Spain.
Andres Morales La MadridDepartment of Pediatric Hematology and Oncology, Hospital Sant Joan de Déu, Barcelona, Spain.
Stefan HolmDepartment of Pediatric Hematology and Oncology, Department of Woman and Child Health, Karolinska University Hospital, Stockholm, Sweden.
Nicolas GerberDepartment of Oncology, University Children's Hospital of Zurich, Zurich, Switzerland.
Rejin KebudiCerrahpasa Medical Faculty & Oncology Institute, Pediatric Hematology-Oncology, Istanbul University, Istanbul, Turkey.
Richard GrundyChildren's Brain Tumour Research Centre, The Medical School, University of Nottingham, Nottingham, UK.
Enrique Lopez-AguilarJefatura de Servicio de Oncología, Hospital de Pediatría, Centro Médico Nacional Siglo XXI, Instituto Mexicano del Seguro Social, Distrito Federal, Mexico.
Marta Zapata-TarresDivision of Pediatric Oncology, Hospital Infantil de Mexico Federico Gomez, Mexico City, Mexico.
John EmmerikStichting Semmy, Weesp, The Netherlands.
Tim HaydenThe DIPG Collaborative, Cincinnati, USA.
Simon BaileyGreat North Childrens Hospital, Victoria Wing, Royal Victoria Infirmary, Newcastle upon Tyne, UK.
Veronica BiassoniPediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy.
Maura MassiminoPediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy.
Jacques GrillInstitut Gustave Roussy, Villejuif, France.
William P VandertopNeurosurgical Center Amsterdam, Academic Medical Center and VU University Medical Center, Amsterdam, The Netherlands.
Gertjan J L KaspersDepartment of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands.
Maryam FouladiDepartment of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
Christof M KrammDivision of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University of Göttingen, Göttingen, Germany.
Dannis G van VuurdenDepartment of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands.
members of the SIOPE DIPG Network
Funding
Cancer Research UK 13457Cancer Research UK 13982
Abstract
Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research, to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG Network. By bringing together biomedical professionals and parents as patient representatives, several collaborative DIPG-related projects have been realized. With help from experts in the fields of information technology, and legal advisors, an international, web-based comprehensive database was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence Interval (CI) 5.6-6.4 months) and the median overall survival is 11.0 months (95% CI 10.5-11.5 months). At two and five years post-diagnosis, 10 and 2% of patients are alive, respectively. The establishment of the SIOPE DIPG Network and SIOPE DIPG Registry means a paradigm shift towards collaborative research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG.
Indexed as
Information ServicesInternational CooperationMagnetic Resonance ImagingRegistriesBrain Stem NeoplasmsChildChild, PreschoolEuropeFemaleGliomaHumansImage Processing, Computer-AssistedMalePonsYoung AdultCollaborationDiffuse intrinsic pontine glioma (DIPG)International research-infrastructureSIOPE DIPG networkSIOPE DIPG registry
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