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.

1st Department of Pediatrics National and Kapodistrian University of Athens 'Aghia Sofia' Children's Hospital Athens Greece

2nd Department of Pediatrics Semmelweis University Budapest Hungary

Academy of Princess Máxima Center for Pediatric Oncology Lundlaan 6 3584 EA Utrecht The Netherlands

Cerrahpasa Medical Faculty and Oncology Institute Pediatric Hematology Oncology Istanbul University Istanbul Turkey

Children's Brain Tumour Research Centre The Medical School University of Nottingham Nottingham UK

Department of Children Oncology and Haematology City Clinical Hospital 31 of Saint Petersburg St Petersburg Russian Federation

Department of Microbiology and Immunology KU Leuven Leuven Belgium

Department of Neuro Oncology Russian Scientific Center of Radiology Moscow Russia

Department of Oncology and Hematology Children's Hospital Zagreb Zagreb Croatia

Department of Oncology The Children's Memorial Health Institute Warsaw Poland

Department of Oncology University Children's Hospital of Zurich Zurich Switzerland

Department of Paediatric Oncology Our Lady's Children's Hospital Crumlin Dublin Ireland

Department of Paediatrics Division of Oncology Haematology VU University Medical Center Amsterdam The Netherlands

Department of Pediatric Hematology and Oncology 2nd Faculty of Medicine University Hospital Motol Charles University Prague Czech Republic

Department of Pediatric Hematology and Oncology Department of Woman and Child Health Karolinska University Hospital Stockholm Sweden

Department of Pediatric Hematology and Oncology Hospital Sant Joan de Déu Barcelona Spain

Department of Pediatric Hematology and Oncology University Hospitals Leuven Leuven Belgium

Department of Pediatric Oncology and Hematology Hospital of Lithuanian University of Health Sciences Kaunas Clinic Kaunas Lithuania

Department of Pediatric Oncology Haematology Children University Hospital Kosice Slovakia

Department of Pediatrics and Adolescent Medicine Medical University of Vienna Vienna Austria

Department of Pediatrics Cancer and Blood Diseases Institute Cincinnati Children's Hospital Medical Center Cincinnati USA

Department of Pediatrics Division of Haematooncology University Medical Center Ljubljana Ljubljana Slovenia

Department of Pediatrics Division of Oncology Hematology Haukeland University Hospital Mons Norway

Department of Radiation Oncology University Medical Center Utrecht and Princess Maxima Center for Pediatric Oncology Utrecht The Netherlands

Department of Radiology and Nuclear Medicine VU University Medical Center Amsterdam The Netherlands

Division of Hematology Oncology and Stem Cell Transplantation Children's Hospital Helsinki University Hospital Helsinki Finland

Division of Pediatric Hematology and Oncology Department of Child and Adolescent Health University of Göttingen Göttingen Germany

Division of Pediatric Neurooncology German Cancer Research Center Heidelberg Heidelberg Germany

Division of Pediatric Oncology Hospital Infantil de Mexico Federico Gomez Mexico City Mexico

Divisions of Molecular Pathology and Cancer Therapeutics The Institute of Cancer Research Sutton UK

Dutch Childhood Oncology Group The Hague The Netherlands

Great North Childrens Hospital Victoria Wing Royal Victoria Infirmary Newcastle upon Tyne UK

Helsinki University Hospital and HUH Children and Adolescents Helsinki Finland

Immuno oncology Centre Köln Cologne Germany

Institut Gustave Roussy Villejuif France

Institute of Neuropathology University of Bonn Medical Center Bonn Germany

Institutes of Neurology and Healthcare Engineering UCL London UK

Jefatura de Servicio de Oncología Hospital de Pediatría Centro Médico Nacional Siglo XXI Instituto Mexicano del Seguro Social Distrito Federal Mexico

KPMG Amstelveen The Netherlands

Neuro oncology Research Group VU University Medical Center Amsterdam The Netherlands

Neurosurgical Center Amsterdam Academic Medical Center and VU University Medical Center Amsterdam The Netherlands

Paediatric Oncology Unit Great Ormond Street Hospital London UK

Pediatric Hemathology and Oncology Division University Hospital S João Alameda Hernani Monteiro Porto Portugal

Pediatric Hematology Oncology The Children's Hospital Reykjavik Iceland

Pediatric Oncology and Hematology Department of Pediatrics University Hospital of Geneva Genève Switzerland

Pediatric Oncology Unit Fondazione IRCCS Istituto Nazionale dei Tumori Milano Italy

Pediatric Oncology Unit Oscar Lambret Comprehensive Cancer Center Lille France

Pediatric Radiotherapy Unit Department of Diagnostic Radiology and Radiotherapy Fondazione IRCCS Istituto Nazionale dei Tumori Milano Italy

Pediatrics and Adolescent Medicine University Hospital Rigshospitalet Copenhagen Denmark

Service de Neuropathologie Hôpital Sainte Anne Paris France

Service de Pédiatrie Onco Hématologie CHRU Hautepierre Strasbourg Strasbourg France

Stichting Semmy Weesp The Netherlands

TCI B 5 Breda The Netherlands

The DIPG Collaborative Cincinnati USA

Trasferimento Tecnologico Fondazione IRCCS Istituto Nazionale dei Tumori Milano Italy

UMR 8203 CNRS Gustave Roussy Paris Saclay University Villejuif France

Université Paris Descartes Hôpital Necker Enfants malades Paris France

Yellow Research B 5 Amsterdam The Netherlands

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Diagnostics and treatment of diffuse intrinsic pontine glioma: where do we stand?