DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Wednesday, March 6, 2013

DIPG Around the World: SIOPE-DIPG

During the 2012 European DIPG meeting in Barcelona Spain,  a European DIPG network and registry was presented by Dannis Van Vuurden of the Netherlands.

The SIOPE-DIPG network began in 2011 Amsterdam meeting by members from the UK, France, Germany, Italy, Spain and the Netherlands.  In the 2012 presentations, membership had increased to 18 members:  Germany, United Kingdom, France, Spain, Italy, Poland, Netherlands,  Czech Republic, Portugal, Belgium, Sweden, Austria, Switzerland, Denmark,  Finland, Norway, Ireland and Iceland.

Each country or coalition has a national coordinator:
Austria-  Irene Slavc
Belgium-  Stefaan Van Gool
Czech Repulic-  David Sumerauer
France-  Pierre Leblond
GPOH- Christof Kramm
Ireland- Jane Pears
Italy- Veronica Biassoni
Netherlands- Dannis van Vuurden
NOPHO- Sanna-Maria Kivivuori
Poland- Marta Perek-Polnik
Portugal- Maria João Gil-da-Costa
Spain- Ofelia Cruz Martinez
UK- Simon Bailey
(Note- NOPHO stands for Nordic Society of Pediatric Haematology and Oncology and includes Denmark, Sweden, Finland and Norway.)

Collaboration is critical for the understanding of  DIPG.   One of the most interesting pages of the DIPG Network and Registry presentation is the estimated number of DIPGs in individual countries (see page 10 of the first reference below).  Two-thirds of the participating countries in SIOPE-DIPG are expected to have more than 10 affected children per year!

The comprehensive DIPG Action Points is another highlight.   This included the issues of corticosteroids, quality of life, palliative care, biopsy, biological studies, treatment protocols, autopsy protocols and further research as well as the registry and network.   Of particular note, each issue had a responsible person named in the spreadsheet.

For those interested in who are the movers and shakers on DIPG research in Europe the below references a must to see.

SIOP Europe- DIPG Network and Registy

2012 Barcelona DIPG Meeting and Powerpoint Presentation

Meeting Action Points Spreadsheet