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

Show simple item record van Zanten, Sophie E. M. Veldhuijzen Baugh, Joshua Chaney, Brooklyn De Jongh, Dennis Aliaga, Esther Sanchez Barkhof, Frederik Noltes, Johan De Wolf, Ruben Van Dijk, Jet Cannarozzo, Antonio Damen-Korbijn, Carin M. Lieverst, Jan A. Colditz, Niclas Hoffmann, Marion Warmuth-Metz, Monika Bison, Brigitte Jones, David T. W. Sturm, Dominik Gielen, Gerrit H. Jones, Chris Hulleman, Esther Calmon, Raphael Castel, David Varlet, Pascale Giraud, Geraldine Slavc, Irene Van Gool, Stefaan Jacobs, Sandra Jadrijevic-Cvrlje, Filip Sumerauer, David Nysom, Karsten Pentikäinen, Virve Kivivuori, Sanna-Maria Leblond, Pierre Entz-Werle, Natasha von Bueren, Andre O. Kattamis, Antonis Hargrave, Darren R. Hauser, Peter Garami, Miklos Thorarinsdottir, Halldora K. Pears, Jane Gandola, Lorenza Rutkauskiene, Giedre Janssens, Geert O. Torsvik, Ingrid K. Perek-Polnik, Marta Gil-da-Costa, Maria J. Zheludkova, Olga Shats, Liudmila SIOPE DIPG Network 2017-06-29T07:04:02Z 2017-06-29T07:04:02Z 2017-04
dc.identifier.citation van Zanten , S E M V , Baugh , J , Chaney , B , De Jongh , D , Aliaga , E S , Barkhof , F , Noltes , J , De Wolf , R , Van Dijk , J , Cannarozzo , A , Damen-Korbijn , C M , Lieverst , J A , Colditz , N , Hoffmann , M , Warmuth-Metz , M , Bison , B , Jones , D T W , Sturm , D , Gielen , G H , 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 , Pentikäinen , V , Kivivuori , S-M , Leblond , P , Entz-Werle , N , von Bueren , A O , Kattamis , A , Hargrave , D R , Hauser , P , Garami , M , Thorarinsdottir , H K , Pears , J , Gandola , L , Rutkauskiene , G , Janssens , G O , Torsvik , I K , Perek-Polnik , M , Gil-da-Costa , M J , Zheludkova , O , Shats , L & SIOPE DIPG Network 2017 , ' Development of the SIOPE DIPG network, registry and imaging repository : a collaborative effort to optimize research into a rare and lethal disease ' , Journal of Neuro-Oncology , vol. 132 , no. 2 , pp. 255-266 .
dc.identifier.other PURE: 86201749
dc.identifier.other PURE UUID: 0b83fa07-2c2d-4ca1-9045-09384e67f4b2
dc.identifier.other WOS: 000399015500007
dc.identifier.other Scopus: 85009885065
dc.description.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. en
dc.format.extent 12
dc.language.iso eng
dc.relation.ispartof Journal of Neuro-Oncology
dc.rights cc_by
dc.rights.uri info:eu-repo/semantics/openAccess
dc.subject Diffuse intrinsic pontine glioma (DIPG)
dc.subject Collaboration
dc.subject International research-infrastructure
dc.subject SIOPE DIPG network
dc.subject SIOPE DIPG registry
dc.subject HISTONE H3F3A
dc.subject DIFFUSE
dc.subject PHENOTYPES
dc.subject CHILDREN
dc.subject CANCER
dc.subject 3122 Cancers
dc.subject 3112 Neurosciences
dc.subject 3124 Neurology and psychiatry
dc.title Development of the SIOPE DIPG network, registry and imaging repository : a collaborative effort to optimize research into a rare and lethal disease en
dc.type Article
dc.contributor.organization Children's Hospital
dc.contributor.organization Clinicum
dc.contributor.organization HUS Children and Adolescents
dc.description.reviewstatus Peer reviewed
dc.relation.issn 0167-594X
dc.rights.accesslevel openAccess
dc.type.version publishedVersion

Files in this item

Total number of downloads: Loading...

Files Size Format View
10.1007_s11060_016_2363_y.pdf 1017.Kb PDF View/Open

This item appears in the following Collection(s)

Show simple item record