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.

Saturday, March 16, 2013

Pediatric Tumor Specific Collaboratives

Thirteen years ago when I was suddenly introduced to the world of pediatric brain tumors there really only were general pediatric brain tumor groups.   Compared to other diseases, the number of kids affected by brain tumors in total was much, much smaller- maybe 3,000-4,000.   The feeling was that we all had to hang together to try to make changes.   If all the groups broke off the number might become so small that it would be hard to make a difference.   And at that time it was probably true; but what one has to remember it that it was an entirely different world.   It was pre-internet.

In the past decade there the support for parents and the research for rarer diseases has exploded through virtual communities.   Many tumor types now have their own internet parent support group- from germ cell tumors to medulloblastoma, from craniopharyngiomas to DIPG.  The internet has made previously impossible connections simple.  The entire landscape changed.

Springing from these parent communities there are now researcher-foundations tumor-specific initiatives.    One such example is the The Neuroblastoma and Medulloblastoma Translational Research Consortium.    If one hasn't heard of this it is worth taking a look-   http://nmtrc.squarespace.com/  
One particularly interesting area is the potential of personalized medicine using genetic information from biopsied to identify therapies for relapsed kids- something that if works could be important for DIPG kids as well.

The Collaborative Ependymoma Research Network has established an outstanding framework.  There are five areas of concentration:
1) Clinical Trials
2) Tumor Profiling and Pathology
3) Developmental Therapeutics
4) Tumor Stem Cell and Laboratory Models
5) Patient Outcomes

DIPG is looking to take its place in these tumor specific initiatives.   Through collaborative efforts there several things have been established:
*The DIPG Preclinical Consortium
*The DIPG Registry
*The DIPG Genomics Repository
*The DIPG Collaborative
These collaborative approaches seem to be the way of the future for pediatric tumors! 

The next DIPG Collaborative Symposium will be held in Cincinnati on May 2-4.  
DIPG Collaborative Symposium Meeting Agenda-