Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease
Por:
van Zanten SE, Baugh J, Chaney B, De Jongh D, Aliaga ES, Barkhof F, Noltes J, De Wolf R, Van Dijk J, Cannarozzo A, Damen-Korbijn CM, Lieverst JA, Colditz N, Hoffmann M, Warmuth-Metz M, Bison B, Jones DT, Sturm D, Gielen GH, Jones C, Hulleman E, Calmon R, Castel D, Varlet P, Giraud G, Slavc I, Van Gool S, Jacobs S, Jadrijevic-Cvrlje F, Sumerauer D, Nysom K, Pentikainen V, Kivivuori SM, Leblond P, Entz-Werle N, von Bueren AO, Kattamis A, Hargrave DR, Hauser P, Garami M, Thorarinsdottir HK, Pears J, Gandola L, Rutkauskiene G, Janssens GO, Torsvik IK, Perek-Polnik M, Gil-da-Costa MJ, Zheludkova O, Shats L, Deak L, Kitanovski L, Cruz-Martínez O, Morales-La Madrid A, Holm S, Gerber N, Kebudi R, Grundy R, Lopez-Aguilar E, Zapata-Tarres M, Emmerik J, Hayden T, Bailey S, Biassoni V, Massimino M, Grill J, Vandertop WP, Kaspers GJ, Fouladi M, Kramm CM, van Vuurden DG and members of the SIOPE DIPG Network
Publicada:
1 abr 2017
Ahead of Print:
21 ene 2017
Resumen:
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.
Filiaciones:
van Zanten SE:
Department of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands.
Baugh J:
Department of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, USA
Chaney B:
Department of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, USA
De Jongh D:
2TCI B.V., Breda, The Netherlands
Aliaga ES:
Department of Radiology and Nuclear Medicine, VU University Medical Center, Amsterdam, The Netherlands
Barkhof F:
Department of Radiology and Nuclear Medicine, VU University Medical Center, Amsterdam, The Netherlands
Institutes of Neurology and Healthcare Engineering, UCL, London, UK
Noltes J:
KPMG, Amstelveen, The Netherlands
De Wolf R:
KPMG, Amstelveen, The Netherlands
Van Dijk J:
Yellow Research B.V., Amsterdam, The Netherlands
Cannarozzo A:
Trasferimento Tecnologico (TTO), Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
Damen-Korbijn CM:
Dutch Childhood Oncology Group (DCOG), The Hague, The Netherlands
Lieverst JA:
Dutch Childhood Oncology Group (DCOG), The Hague, The Netherlands
Colditz N:
Division of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University of Göttingen, Göttingen, Germany
Hoffmann M:
Division of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University of Göttingen, Göttingen, Germany
Warmuth-Metz M:
Division of Pediatric Neurooncology, German Cancer Research Center (DKFZ) Heidelberg, Heidelberg, Germany
Bison B:
Division of Pediatric Neurooncology, German Cancer Research Center (DKFZ) Heidelberg, Heidelberg, Germany
Jones DT:
Institute of Neuropathology, University of Bonn Medical Center, Bonn, Germany
Sturm D:
Institute of Neuropathology, University of Bonn Medical Center, Bonn, Germany
Gielen GH:
Institute of Neuropathology, University of Bonn Medical Center, Bonn, Germany
Jones C:
Divisions of Molecular Pathology and Cancer Therapeutics, The Institute of Cancer Research, Sutton, UK
Hulleman E:
Neuro-oncology Research Group, VU University Medical Center, Amsterdam, The Netherlands
Calmon R:
Université Paris-Descartes, Hôpital Necker-Enfants malades, Paris, France
Castel D:
UMR 8203 CNRS, Gustave Roussy, Paris-Saclay University, Villejuif, France
Varlet P:
Service de Neuropathologie, Hôpital Sainte-Anne, Paris, France
Giraud G:
Institut Gustave Roussy, Villejuif, France
Slavc I:
Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
Van Gool S:
Immuno-oncology Centre Köln, Cologne, Germany
Jacobs S:
Department of Pediatric Hematology and Oncology, University Hospitals Leuven, Leuven, Belgium
Department of Microbiology and Immunology, KU Leuven, Leuven, Belgium
Jadrijevic-Cvrlje F:
Department of Oncology and Hematology, Children's Hospital Zagreb, Zagreb, Croatia
Sumerauer D:
Department of Pediatric Hematology and Oncology, 2nd Faculty of Medicine, University Hospital Motol, Charles University, Prague, Czech Republic
Nysom K:
Pediatrics and Adolescent Medicine, University Hospital Rigshospitalet, Copenhagen, Denmark
Pentikainen V:
Division of Hematology-Oncology and Stem Cell Transplantation, Children's Hospital, Helsinki University Hospital, Helsinki, Finland
Kivivuori SM:
Helsinki University Hospital (HUH) and HUH Children and Adolescents, Helsinki, Finland
Leblond P:
Pediatric Oncology Unit, Oscar Lambret Comprehensive Cancer Center, Lille, France
Entz-Werle N:
Service de Pédiatrie Onco-Hématologie, CHRU Hautepierre Strasbourg, Strasbourg, France
von Bueren AO:
Pediatric Oncology and Hematology, Department of Pediatrics, University Hospital of Geneva, Genève, Switzerland
Kattamis A:
First Department of Pediatrics, National and Kapodistrian University of Athens, 'Aghia Sofia' Children's Hospital, Athens, Greece
Hargrave DR:
Paediatric Oncology Unit, Great Ormond Street Hospital (GOSH), London, UK
Hauser P:
Second Department of Pediatrics, Semmelweis University, Budapest, Hungary
Garami M:
Second Department of Pediatrics, Semmelweis University, Budapest, Hungary
Thorarinsdottir HK:
Pediatric Hematology-Oncology, The Children's Hospital, Reykjavik, Iceland
Pears J:
Department of Paediatric Oncology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland
Gandola L:
Pediatric Radiotherapy Unit, Department of Diagnostic Radiology and Radiotherapy, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
Rutkauskiene G:
Department of Pediatric Oncology and Hematology, Hospital of Lithuanian University of Health Sciences Kaunas Clinic, Kaunas, Lithuania
Janssens GO:
Department of Radiation Oncology, University Medical Center Utrecht and Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands
Torsvik IK:
Department of Pediatrics, Division of Oncology/Hematology, Haukeland University Hospital, Mons, Norway
Perek-Polnik M:
Department of Oncology, The Children's Memorial Health Institute, Warsaw, Poland
Gil-da-Costa MJ:
Pediatric Hemathology and Oncology Division, University Hospital S. João Alameda Hernani Monteiro, Porto, Portugal
Zheludkova O:
Department of Neuro-Oncology, Russian Scientific Center of Radiology, Moscow, Russia
Shats L:
Department of Children Oncology and Haematology, City Clinical Hospital #31 of Saint-Petersburg, St.-Petersburg, Russian Federation
Deak L:
Department of Pediatric Oncology/ Haematology, Children University Hospital, Kosice, Slovakia
Kitanovski L:
Department of Pediatrics, Division of Haematooncology, University Medical Center Ljubljana, Ljubljana, Slovenia
Cruz-Martínez O:
Department of Pediatric Hematology and Oncology, Hospital Sant Joan de Déu, Barcelona, Spain
Morales-La Madrid A:
Department of Pediatric Hematology and Oncology, Hospital Sant Joan de Déu, Barcelona, Spain
Holm S:
Department of Pediatric Hematology and Oncology, Department of Woman and Child Health, Karolinska University Hospital, Stockholm, Sweden
Gerber N:
Department of Oncology, University Children's Hospital of Zurich, Zurich, Switzerland
Kebudi R:
Cerrahpasa Medical Faculty & Oncology Institute, Pediatric Hematology-Oncology, Istanbul University, Istanbul, Turkey
Grundy R:
Children's Brain Tumour Research Centre, The Medical School, University of Nottingham, Nottingham, UK
Lopez-Aguilar E:
Jefatura de Servicio de Oncología, Hospital de Pediatría, Centro Médico Nacional Siglo XXI, Instituto Mexicano del Seguro Social, Distrito Federal, Mexico
Zapata-Tarres M:
Division of Pediatric Oncology, Hospital Infantil de Mexico Federico Gomez, Mexico City, Mexico
Emmerik J:
Stichting Semmy, Weesp, The Netherlands
Hayden T:
The DIPG Collaborative, Cincinnati, USA
Bailey S:
Great North Childrens Hospital, Victoria Wing, Royal Victoria Infirmary, Newcastle upon Tyne, UK
Biassoni V:
Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
Massimino M:
Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
Grill J:
Institut Gustave Roussy, Villejuif, France
Vandertop WP:
Neurosurgical Center Amsterdam, Academic Medical Center and VU University Medical Center, Amsterdam, The Netherlands
Kaspers GJ:
Department of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands
Academy of Princess Máxima Center for Pediatric Oncology, Lundlaan 6, 3584 EA, Utrecht, The Netherlands
Fouladi M:
Department of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, USA
Kramm CM:
Division of Pediatric Hematology and Oncology, Department of Child and Adolescent Health, University of Göttingen, Göttingen, Germany
van Vuurden DG:
Department of Paediatrics, Division of Oncology/Haematology, VU University Medical Center, Amsterdam, The Netherlands
Green Submitted, Green Published, hybrid
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