@article{2998355,
    title = "Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease",
    author = "Veldhuijzen van Zanten, S.E.M. and Baugh, J. and Chaney, B. and De Jongh, D. and Sanchez Aliaga, E. and Barkhof, F. and Noltes, J. and De Wolf, R. and Van Dijk, J. and Cannarozzo, A. and Damen-Korbijn, C.M. and Lieverst, J.A. and Colditz, N. and Hoffmann, M. and Warmuth-Metz, M. and Bison, B. and Jones, D.T.W. and Sturm, D. and Gielen, G.H. and Jones, C. and Hulleman, E. and Calmon, R. and Castel, D. and Varlet, P. and Giraud, G. and Slavc, I. and Van Gool, S. and Jacobs, S. and Jadrijevic-Cvrlje, F. and Sumerauer, D. and Nysom, K. and Pentikainen, V. and Kivivuori, S.-M. and Leblond, P. and Entz-Werle, N. and von Bueren, A.O. and Kattamis, A. and Hargrave, D.R. and Hauser, P. and Garami, M. and Thorarinsdottir, H.K. and Pears, J. and Gandola, L. and Rutkauskiene, G. and Janssens, G.O. and Torsvik, I.K. and Perek-Polnik, M. and Gil-da-Costa, M.J. and Zheludkova, O. and Shats, L. and Deak, L. and Kitanovski, L. and Cruz, O. and Morales La Madrid, A. and Holm, S. and Gerber, N. and Kebudi, R. and Grundy, R. and Lopez-Aguilar, E. and Zapata-Tarres, M. and Emmerik, J. and Hayden, T. and Bailey, S. and Biassoni, V. and Massimino, M. and Grill, J. and Vandertop, W.P. and Kaspers, G.J.L. and Fouladi, M. and Kramm, C.M. and van Vuurden, D.G. and on behalf of the members of the SIOPE DIPG Network",
    journal = "Journal of Neuro-Oncology",
    year = "2017",
    volume = "132",
    number = "2",
    pages = "255-266",
    publisher = "Springer New York LLC",
    issn = "0167-594X",
    doi = "10.1007/s11060-016-2363-y",
    keywords = "Article;  child;  child parent relation;  cohort analysis;  controlled study;  disease registry;  female;  health care policy;  human;  information technology;  informed consent;  major clinical study;  male;  nuclear magnetic resonance imaging;  overall survival;  pontine glioma;  progression free survival;  prospective study;  retrospective study;  brain stem tumor;  diagnostic imaging;  Europe;  glioma;  image processing;  information service;  international cooperation;  pons;  preschool child;  register;  young adult, Brain Stem Neoplasms;  Child;  Child, Preschool;  Europe;  Female;  Glioma;  Humans;  Image Processing, Computer-Assisted;  Information Services;  International Cooperation;  Magnetic Resonance Imaging;  Male;  Pons;  Registries;  Young Adult",
    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. © 2017, The Author(s)."
}