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Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease
SE. Veldhuijzen van Zanten, J. Baugh, B. Chaney, D. De Jongh, E. Sanchez Aliaga, F. Barkhof, J. Noltes, R. De Wolf, J. Van Dijk, A. Cannarozzo, CM. Damen-Korbijn, JA. Lieverst, N. Colditz, M. Hoffmann, M. Warmuth-Metz, B. Bison, DT. Jones, D....
Language English Country United States
Document type Journal Article, Research Support, Non-U.S. Gov't
NLK
ProQuest Central
from 1997-01-01 to 1 year ago
Medline Complete (EBSCOhost)
from 2009-07-01 to 1 year ago
Health & Medicine (ProQuest)
from 1997-01-01 to 1 year ago
Public Health Database (ProQuest)
from 1997-01-01 to 1 year ago
- MeSH
- Child MeSH
- Glioma diagnostic imaging MeSH
- Information Services * MeSH
- Humans MeSH
- Magnetic Resonance Imaging * MeSH
- International Cooperation * MeSH
- Young Adult MeSH
- Brain Stem Neoplasms diagnostic imaging MeSH
- Image Processing, Computer-Assisted MeSH
- Pons diagnostic imaging MeSH
- Child, Preschool MeSH
- Registries * MeSH
- Check Tag
- Child MeSH
- Humans MeSH
- Young Adult MeSH
- Male MeSH
- Child, Preschool MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Europe MeSH
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.
2nd Department of Pediatrics Semmelweis University Budapest Hungary
Children's Brain Tumour Research Centre The Medical School University of Nottingham Nottingham UK
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 Pediatric Hematology and Oncology Hospital Sant Joan de Déu Barcelona Spain
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 Division of Oncology Hematology Haukeland University Hospital Mons Norway
Department of Radiology and Nuclear Medicine VU University Medical Center Amsterdam The Netherlands
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
KPMG Amstelveen The Netherlands
Neuro oncology Research Group VU University Medical Center Amsterdam The Netherlands
Paediatric Oncology Unit Great Ormond Street Hospital London UK
Pediatric Hematology Oncology The Children's Hospital Reykjavik Iceland
Pediatric Oncology Unit Fondazione IRCCS Istituto Nazionale dei Tumori Milano Italy
Pediatric Oncology Unit Oscar Lambret Comprehensive Cancer Center Lille France
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
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
References provided by Crossref.org
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- $a Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease / $c SE. Veldhuijzen van Zanten, J. Baugh, B. Chaney, D. De Jongh, E. Sanchez Aliaga, F. Barkhof, J. Noltes, R. De Wolf, J. Van Dijk, A. Cannarozzo, CM. Damen-Korbijn, JA. Lieverst, N. Colditz, M. Hoffmann, M. Warmuth-Metz, B. Bison, DT. Jones, D. Sturm, GH. Gielen, C. Jones, E. Hulleman, R. Calmon, D. Castel, P. Varlet, G. Giraud, I. Slavc, S. Van Gool, S. Jacobs, F. Jadrijevic-Cvrlje, D. Sumerauer, K. Nysom, V. Pentikainen, SM. Kivivuori, P. Leblond, N. Entz-Werle, AO. von Bueren, A. Kattamis, DR. Hargrave, P. Hauser, M. Garami, HK. Thorarinsdottir, J. Pears, L. Gandola, G. Rutkauskiene, GO. Janssens, IK. Torsvik, M. Perek-Polnik, MJ. Gil-da-Costa, O. Zheludkova, L. Shats, L. Deak, L. Kitanovski, O. Cruz, A. Morales La Madrid, S. Holm, N. Gerber, R. Kebudi, R. Grundy, E. Lopez-Aguilar, M. Zapata-Tarres, J. Emmerik, T. Hayden, S. Bailey, V. Biassoni, M. Massimino, J. Grill, WP. Vandertop, GJ. Kaspers, M. Fouladi, CM. Kramm, DG. van Vuurden, . ,
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- $a 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.
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