External reviewers? Yes, you see, the NANT is accountable to many and one of the most critical is the NCI. Every year they are reviewed for the quality of their research and the directions their research is going. The first portion of the meeting each year is a presentation on the 4 research areas that make up the Program Project Grant (PPG). The PPG represents over half of the funding that the NANT receives. It covers much of the basic science research that serves as the foundation of the clinical trials that we eventually see. It does not, however, cover the bulk of the clinical trials cost. This is why I have always been such a believer in supporting the NANT. The quality of the research is there. The problem is getting the funding to get the research into the kiddos. That comes from private philanthropy and every $3000 - $6000+ they raise gets another child on trial (depending on the cost of drug and supportive care). Regardless, today is an important day for the NANT as their work is reviewed by outside medical experts.
But, back to last night. As I mentioned, I had the honor to join all of these "big brains" around the table. With most, I discussed their respective research initiatives.
- What are they doing?
- How are they doing it?
- What do they believe?
One of my discussions focused on genomics and the interesting anomalies between NMYC and non-NMYC amplified tumors. I know, for many of you that sounds like fingers on a chalkboard but, hold on. It turns out that this little "nerd" conversation actually relates to little old Sydney. As many of you remember, Sydney was NMYC amplified. That is a horrible prognostic indicator. Or, in other words, bad news about survival. However, I was surprised to find out that their was a good subset in this population. Yes, their is a certain population of NMYC amplified kiddos that did rather well in comparison to the rest. Surprisingly, and unbeknownst to me, their was an abstract written by Dr. Cohn at the 2006 ANR which discussed this anomaly. In short, their is apparently a population of NMYC amplified but hyperdiploid kiddos that have done well. AND, guess what?
Sydney was hyperdiploid.
Now, I have not yet reviewed the abstract. Furthermore, I can tell you that this seems in direct contradiction to some research that the same group published about a year before the meeting at the ANR. However, the fact that they did provide an abstract back then and the fact that this pattern was seen again by another well respected group recently using different methodologies seems to indicate that this may just be real.
Could this be one of the reasons that Sydney has thus far survived the beast?
Very interesting, isn't it? Now, I would not rush out and ask your oncologist to run a test on your child's tumor. Until, I read it myself and talk to all of the big brains involved I won't know how definitive it is. However, if it is true, it could impact your treatment decisions. For example, I might be more inclined to participate in trials that extend treatment or offer novel therapies if I have a child that is NMYC amplified but NOT hyper diploid as opposed to one who is not. However, how big the effect is and how meaningful is yet to be seen. How big of a difference is there? I don't know -- YET...
Very, very interesting.
Anyway, I will research this later. This is a different post than I normally write. I usually do all of my research before I post something. So, take this with a grain of salt. However, I thought getting it out there may stimulate some good discussion from some differing perspectives. As I get time over the week I will have more discussions and perhaps find some more definitive answers.
Until then, purpose churns on.