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, April 6, 2013

Brazil and DIPG

How much interest is there in DIPG around the world?

One of the most fascinating parts of this blog is a part that I suspect few have ever seen- the cluster map.    The cluster map tracks the general location of people who are checking the blog.    There are dots on every country, well, except Antartica.  Scrolling down on the right hand side there is a listing of more than 90 countries!  Just the other day I noted Brazil come up twice in a few hours from different parts of the country.   I wondered, "what is Brazil doing in DIPG?"  

Here are a couple of things I found.

Brazil does have a clinical trial on DIPG.  It isn't necessarily easy to find in clinicaltrials.gov as it is listed under the keyword brainstem gliomas (not pontine glioma or DIPG).  Still, from it's official name it clearly is a DIPG trial- Use of Nimotuzamab and Radiotherapy in the Treatment of Pediatric Patients with Diffuse Brainstem Glioma.  The trial was first received on the site in June 2010 and still listed an enrolling patients.  There is a tight age restrictions (age 3-18) and is open at 4 Brazilian and one Cuban hospital.

In addition, Brazil presented an abstract,  Pediatric Brainstem Glioma: Experience of One Brazilian Institution, at the 15th International Symposium of Pediatric Neuro-Oncology (ISPNO) in Toronto, Canada in June 2012.  The authors wished to understand the variety of brainstem gliomas that presented to  the Instituo Nacional de Cancer in Rio de Janerio over a 5 year period (2005-2010).  Of the 48 children diagnosed with brainstem gliomas, 40 were considered diffuse and 39 were in the pons.

In looking at the over survival (OS) among the groups:
1 year OS- midbrain 100%, medulla 75%, and pons 41%
2 year OS-midbrain 100%, medulla 75% , and pons 12.93%
2 year OS by extension- focal 100%, exophytic 67% and diffuse 15%

It is what we have seen before- diffuse, pontine tumors have the worse outcome and need new approaches to improve outcomes.  Still, it is good to see that Brazil is also a place in the world trying to learn more about DIPG and looking for new ways collaboratively to treat kids with DIPGs.