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dc.contributor.authorVeldhuijzen van Zanten, SEM
dc.contributor.authorBaugh, J
dc.contributor.authorChaney, B
dc.contributor.authorDe Jongh, D
dc.contributor.authorSanchez Aliaga, E
dc.contributor.authorBarkhof, F
dc.contributor.authorNoltes, J
dc.contributor.authorDe Wolf, R
dc.contributor.authorVan Dijk, J
dc.contributor.authorCannarozzo, A
dc.contributor.authorDamen-Korbijn, CM
dc.contributor.authorLieverst, JA
dc.contributor.authorColditz, N
dc.contributor.authorHoffmann, M
dc.contributor.authorWarmuth-Metz, M
dc.contributor.authorBison, B
dc.contributor.authorJones, DTW
dc.contributor.authorSturm, D
dc.contributor.authorGielen, GH
dc.contributor.authorJones, C
dc.contributor.authorHulleman, E
dc.contributor.authorCalmon, R
dc.contributor.authorCastel, D
dc.contributor.authorVarlet, P
dc.contributor.authorGiraud, G
dc.contributor.authorSlavc, I
dc.contributor.authorVan Gool, S
dc.contributor.authorJacobs, S
dc.contributor.authorJadrijevic-Cvrlje, F
dc.contributor.authorSumerauer, D
dc.contributor.authorNysom, K
dc.contributor.authorPentikainen, V
dc.contributor.authorKivivuori, S-M
dc.contributor.authorLeblond, P
dc.contributor.authorEntz-Werle, N
dc.contributor.authorvon Bueren, AO
dc.contributor.authorKattamis, A
dc.contributor.authorHargrave, DR
dc.contributor.authorHauser, P
dc.contributor.authorGarami, M
dc.contributor.authorThorarinsdottir, HK
dc.contributor.authorPears, J
dc.contributor.authorGandola, L
dc.contributor.authorRutkauskiene, G
dc.contributor.authorJanssens, GO
dc.contributor.authorTorsvik, IK
dc.contributor.authorPerek-Polnik, M
dc.contributor.authorGil-da-Costa, MJ
dc.contributor.authorZheludkova, O
dc.contributor.authorShats, L
dc.contributor.authorDeak, L
dc.contributor.authorKitanovski, L
dc.contributor.authorCruz, O
dc.contributor.authorMorales La Madrid, A
dc.contributor.authorHolm, S
dc.contributor.authorGerber, N
dc.contributor.authorKebudi, R
dc.contributor.authorGrundy, R
dc.contributor.authorLopez-Aguilar, E
dc.contributor.authorZapata-Tarres, M
dc.contributor.authorEmmerik, J
dc.contributor.authorHayden, T
dc.contributor.authorBailey, S
dc.contributor.authorBiassoni, V
dc.contributor.authorMassimino, M
dc.contributor.authorGrill, J
dc.contributor.authorVandertop, WP
dc.contributor.authorKaspers, GJL
dc.contributor.authorFouladi, M
dc.contributor.authorKramm, CM
dc.contributor.authorvan Vuurden, DG
dc.contributor.authormembers of the SIOPE DIPG Network,
dc.date.accessioned2017-03-01T11:12:20Z
dc.date.issued2017-04-01
dc.identifier.citationJournal of neuro-oncology, 2017, 132 (2), pp. 255 - 266
dc.identifier.issn0167-594X
dc.identifier.urihttps://repository.icr.ac.uk/handle/internal/412
dc.identifier.eissn1573-7373
dc.identifier.doi10.1007/s11060-016-2363-y
dc.description.abstractDiffuse 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.
dc.formatPrint-Electronic
dc.format.extent255 - 266
dc.languageeng
dc.language.isoeng
dc.publisherSPRINGER
dc.rights.urihttps://creativecommons.org/licenses/by/4.0
dc.subjectmembers of the SIOPE DIPG Network
dc.subjectPons
dc.subjectHumans
dc.subjectGlioma
dc.subjectBrain Stem Neoplasms
dc.subjectMagnetic Resonance Imaging
dc.subjectRegistries
dc.subjectInternational Cooperation
dc.subjectImage Processing, Computer-Assisted
dc.subjectInformation Services
dc.subjectChild
dc.subjectChild, Preschool
dc.subjectEurope
dc.subjectFemale
dc.subjectMale
dc.subjectYoung Adult
dc.titleDevelopment of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease.
dc.typeJournal Article
dcterms.dateAccepted2016-12-25
rioxxterms.versionofrecord10.1007/s11060-016-2363-y
rioxxterms.licenseref.urihttps://creativecommons.org/licenses/by/4.0
rioxxterms.licenseref.startdate2017-04
rioxxterms.typeJournal Article/Review
dc.relation.isPartOfJournal of neuro-oncology
pubs.issue2
pubs.notesNot known
pubs.organisational-group/ICR
pubs.organisational-group/ICR/Primary Group
pubs.organisational-group/ICR/Primary Group/ICR Divisions
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Cancer Therapeutics
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Cancer Therapeutics/Glioma Team
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Molecular Pathology
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Molecular Pathology/Glioma Team
pubs.organisational-group/ICR
pubs.organisational-group/ICR/Primary Group
pubs.organisational-group/ICR/Primary Group/ICR Divisions
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Cancer Therapeutics
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Cancer Therapeutics/Glioma Team
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Molecular Pathology
pubs.organisational-group/ICR/Primary Group/ICR Divisions/Molecular Pathology/Glioma Team
pubs.publication-statusPublished
pubs.volume132
pubs.embargo.termsNot known
icr.researchteamGlioma Team
dc.contributor.icrauthorJones, Chris


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