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.

Tuesday, April 16, 2013

DIPG Yahoogroup 5th Anniversary

Today marks the 5th anniversary of the DIPG Yahoogroup.  Started by on April 16th, 2008 by one mother who wanted to have a place for DIPG parents to talk with one another and share experiences as well as information.   From that one, there are now 616 members listed with almost 25,000 posts.

So much has changed in those five years.   Back in 2008,  it was common to hear parents say brainstem glioma not realizing how heterogeneous that term really was.   I don't remember any listings of trials on clinicaltrials.gov under DIPG.   Today there are 26 listed making it much easier for parents to locate and sort through these trials.   And back there research was severely limited because there was no tissue to examine; and because of the lack of tissue there were no cell lines or representative animal models.

The research landscape was just beginning to change for DIPG with the French biopsy study having just been published the year before and several institutions working to gather post-mortem samples.  The start of the list coincided with the rapid expansion of DIPG research.

I firmly believe it is because of some of the members of this group that DIPG research was pushed more quickly. Some played their part on spreading the word on tumor donation while others funded workshops, trials and research.   Often interesting items appeared on the list significantly before publication like the MD Anderson reirradation pilot- perhaps pushing the spread of information faster than ever has been seen before.

Here is a listing of some of the important events in DIPG over the past decade:

2002- Sick Kids start autopsy collection of DIPGs
2005- France starts trial with upfront biospy
2006- St Jude stars autopsy collection of DIPGs
2007- France first reports on trial with upfront biopsy
2008- DIPG Yahoogroup opened
2009- First International DIPG Meeting in Barcelona
2009- FDA DIPG biopsy hearing
2009- Dylan donates tumor to Stanford
2009- First CED trial on recurrent DIPG open in US
2010- Toronto DIPG Think Tank
2010- First DIPG Genetic Analysis Publication
2011- Amsterdam DIPG meeting
2011- Stanford reveals first DIPG neurosphere
2011- Vaccine study for newly diagnosed DIPG begins at Stanford
2011- First DIPG/Oncolytic Virus Case
2011- DIPG.org Symposium
2011- DIPG Preclical Consortium formed
2011- DIPG Registry
2011- MD Anderson opens first DIPG Reiiradiation trial
2011- DIPG Concensus Conference at the NIH
2012- DIPG Barcelona Conference
2012- ACCO Book- Understanding the Journey
2012- DIPG Genomics Repository
2012- US multi-institution biopsy trial begins
2012- CED trial for newly diagnosed DIPG opens at Cornell
2013- Academic Colloquium: State of the Art in DIPG (Amsterdam)

I extend deep gratitude to all that participated in the list which has helped get us to where we are today.