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000120635 1001_ $$00000-0002-3888-0977$$aVeldhuijzen van Zanten, Sophie E M$$b0
000120635 245__ $$aDevelopment of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease.
000120635 260__ $$aDordrecht [u.a.]$$bSpringer Science + Business Media B.V$$c2017
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000120635 520__ $$aDiffuse 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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000120635 7001_ $$aBaugh, Joshua$$b1
000120635 7001_ $$aChaney, Brooklyn$$b2
000120635 7001_ $$aDe Jongh, Dennis$$b3
000120635 7001_ $$aSanchez Aliaga, Esther$$b4
000120635 7001_ $$aBarkhof, Frederik$$b5
000120635 7001_ $$aNoltes, Johan$$b6
000120635 7001_ $$aDe Wolf, Ruben$$b7
000120635 7001_ $$aVan Dijk, Jet$$b8
000120635 7001_ $$aCannarozzo, Antonio$$b9
000120635 7001_ $$aDamen-Korbijn, Carin M$$b10
000120635 7001_ $$aLieverst, Jan A$$b11
000120635 7001_ $$aColditz, Niclas$$b12
000120635 7001_ $$aHoffmann, Marion$$b13
000120635 7001_ $$0P:(DE-HGF)0$$aWarmuth-Metz, Monika$$b14
000120635 7001_ $$0P:(DE-HGF)0$$aBison, Brigitte$$b15
000120635 7001_ $$0P:(DE-He78)551bb92841f634070997aa168d818492$$aJones, David$$b16$$udkfz
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000120635 7001_ $$aGielen, Gerrit H$$b18
000120635 7001_ $$aJones, Chris$$b19
000120635 7001_ $$aHulleman, Esther$$b20
000120635 7001_ $$aCalmon, Raphael$$b21
000120635 7001_ $$aCastel, David$$b22
000120635 7001_ $$aVarlet, Pascale$$b23
000120635 7001_ $$aGiraud, Géraldine$$b24
000120635 7001_ $$aSlavc, Irene$$b25
000120635 7001_ $$aVan Gool, Stefaan$$b26
000120635 7001_ $$aJacobs, Sandra$$b27
000120635 7001_ $$aJadrijevic-Cvrlje, Filip$$b28
000120635 7001_ $$aSumerauer, David$$b29
000120635 7001_ $$aNysom, Karsten$$b30
000120635 7001_ $$aPentikainen, Virve$$b31
000120635 7001_ $$aKivivuori, Sanna-Maria$$b32
000120635 7001_ $$aLeblond, Pierre$$b33
000120635 7001_ $$aEntz-Werle, Natasha$$b34
000120635 7001_ $$avon Bueren, Andre O$$b35
000120635 7001_ $$aKattamis, Antonis$$b36
000120635 7001_ $$aHargrave, Darren R$$b37
000120635 7001_ $$aHauser, Péter$$b38
000120635 7001_ $$aGarami, Miklos$$b39
000120635 7001_ $$aThorarinsdottir, Halldora K$$b40
000120635 7001_ $$aPears, Jane$$b41
000120635 7001_ $$aGandola, Lorenza$$b42
000120635 7001_ $$aRutkauskiene, Giedre$$b43
000120635 7001_ $$aJanssens, Geert O$$b44
000120635 7001_ $$aTorsvik, Ingrid K$$b45
000120635 7001_ $$aPerek-Polnik, Marta$$b46
000120635 7001_ $$aGil-da-Costa, Maria J$$b47
000120635 7001_ $$aZheludkova, Olga$$b48
000120635 7001_ $$aShats, Liudmila$$b49
000120635 7001_ $$aDeak, Ladislav$$b50
000120635 7001_ $$aKitanovski, Lidija$$b51
000120635 7001_ $$aCruz, Ofelia$$b52
000120635 7001_ $$aMorales La Madrid, Andres$$b53
000120635 7001_ $$aHolm, Stefan$$b54
000120635 7001_ $$aGerber, Nicolas$$b55
000120635 7001_ $$aKebudi, Rejin$$b56
000120635 7001_ $$aGrundy, Richard$$b57
000120635 7001_ $$aLopez-Aguilar, Enrique$$b58
000120635 7001_ $$aZapata-Tarres, Marta$$b59
000120635 7001_ $$aEmmerik, John$$b60
000120635 7001_ $$aHayden, Tim$$b61
000120635 7001_ $$aBailey, Simon$$b62
000120635 7001_ $$aBiassoni, Veronica$$b63
000120635 7001_ $$aMassimino, Maura$$b64
000120635 7001_ $$aGrill, Jacques$$b65
000120635 7001_ $$aVandertop, William P$$b66
000120635 7001_ $$aKaspers, Gertjan J L$$b67
000120635 7001_ $$aFouladi, Maryam$$b68
000120635 7001_ $$aKramm, Christof M$$b69
000120635 7001_ $$avan Vuurden, Dannis G$$b70
000120635 7001_ $$aNetwork, members of the SIOPE DIPG$$b71$$eCollaboration Author
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