Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease
Tarih
2017Yazar
STURM, Dominik
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
DEAK, Ladislav
KITANOVSKI, Lidija
MORALES LA MADRID, Andres
Holm, Stefan
Gerber, Nicolas
Grundy, Richard
LOPEZ-AGUILAR, Enrique
ZAPATA-TARRES, Marta
EMMERIK, John
HAYDEN, Tim
BAILEY, Simon
BIASSONI, Veronica
GRILL, Jacques
VANDERTOP, William P.
Kaspers, Gertjan J. L.
FOULADI, Maryam
KRAMM, Christof M.
van Vuurden, Dannis G.
Kebudi, Rejin
MASSIMINO, Maura
CRUZ, Ofelia
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.
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
Pentikainen, Virve
KIVIVUORI, Sanna-Maria
LEBLOND, Pierre
ENTZ-WERLE, Natasha
von Bueren, Andre O.
KATTAMIS, Antonis
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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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