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-