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21.01.2017 | Clinical Study | Ausgabe 2/2017 Open Access

Journal of Neuro-Oncology 2/2017

Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease

Zeitschrift:
Journal of Neuro-Oncology > Ausgabe 2/2017
Autoren:
Sophie E. M. Veldhuijzen van Zanten, Joshua Baugh, Brooklyn Chaney, Dennis De Jongh, Esther Sanchez Aliaga, Frederik Barkhof, Johan Noltes, Ruben De Wolf, Jet Van Dijk, Antonio Cannarozzo, Carin M. Damen-Korbijn, Jan A. Lieverst, Niclas Colditz, Marion Hoffmann, Monika Warmuth-Metz, Brigitte Bison, David T. W. Jones, Dominik Sturm, Gerrit H. Gielen, Chris Jones, Esther Hulleman, Raphael Calmon, David Castel, Pascale Varlet, Géraldine Giraud, Irene Slavc, Stefaan Van Gool, Sandra Jacobs, Filip Jadrijevic-Cvrlje, David Sumerauer, Karsten Nysom, Virve Pentikainen, Sanna-Maria Kivivuori, Pierre Leblond, Natasha Entz-Werle, Andre O. von Bueren, Antonis Kattamis, Darren R. Hargrave, Péter Hauser, Miklos Garami, Halldora K. Thorarinsdottir, Jane Pears, Lorenza Gandola, Giedre Rutkauskiene, Geert O. Janssens, Ingrid K. Torsvik, Marta Perek-Polnik, Maria J. Gil-da-Costa, Olga Zheludkova, Liudmila Shats, Ladislav Deak, Lidija Kitanovski, Ofelia Cruz, Andres Morales La Madrid, Stefan Holm, Nicolas Gerber, Rejin Kebudi, Richard Grundy, Enrique Lopez-Aguilar, Marta Zapata-Tarres, John Emmerik, Tim Hayden, Simon Bailey, Veronica Biassoni, Maura Massimino, Jacques Grill, William P. Vandertop, Gertjan J. L. Kaspers, Maryam Fouladi, Christof M. Kramm, Dannis G. van Vuurden, on behalf of the members of the SIOPE DIPG Network
Wichtige Hinweise

Electronic supplementary material

The online version of this article (doi:10.​1007/​s11060-016-2363-y) contains supplementary material, which is available to authorized users.

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.

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Zusatzmaterial
Supplementary material 1 (DOCX 547 KB)
11060_2016_2363_MOESM1_ESM.docx
Supplementary material 2 (DOCX 95 KB)
11060_2016_2363_MOESM2_ESM.docx
Supplementary material 3 (DOCX 154 KB)
11060_2016_2363_MOESM3_ESM.docx
Supplementary material 4 (DOC 67 KB)
11060_2016_2363_MOESM4_ESM.doc
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