Thursday, April 2, 2009

Google for the purposefully imbalanced

Once a week, I spend several hours fingering my way through all of the current published neuroblastoma research. I do several searches on PubMed. For those of you who have a real life and aren't mired by the insanity of constantly searching for something - anything - that might hasten a cure, Pub Med is the National Library of Medicine's online database of over 18 million citations of medical articles. You can search on topics and get a listing of all of the medical articles that deal with that subject. Think of it as Google for research nerds and the purposefully imbalanced. While you can search on such generic terms as 'neuroblastoma' (and sometimes I do) you can also search on specific terms such as 'GD2' or 'ch14.18'. You can even combine terms to get really granular results. Regardless, each search returns pages and pages of results and links to abstracts (kind of like summaries). If you have access to a medical library you can actually take it one step further and even read the entire article. I am lucky. I have pretty robust access.

It probably would not surprise you to learn that I read almost every abstract about neuroblastoma. Even with some 27000 hits on the term neuroblastoma. I have found that I can get through the 15 or 20 some abstracts every week pretty quickly. It is actually the 1 or 2 that I really take interest in that take the time. If I find an abstract that interests me it usually leads to reading the article which then leads to more articles and the next thing I know I have spent 2 or 3 hour hours without even realizing it. That is just the world of neuroblastoma. I also often search on topics on other cancers looking for commonalities. For me, understanding the big picture helps me prioritize what I think is important. It isn't just if the science is good. Is the drug available? Is there better research out there? Is it feasible? How will it impact patients? When will it impact patients? How will it fit in to the overall treatment picture? How ripe is it for translation? What kind of impact can dollars have? The key to me is finding things that should be prioritized. It isn't enough that a drug is believed to have activity in children with neuroblastoma. To me, we have to know (or be very sure) that it is better than any other opportunity in treatment now or coming down the pike. It has to fit into the entire picture. If it isn't, it will be taking the dollars and the patients that could be used on something more promising.

There are good ideas out there. They aren't being funded.

So, what, in the heck does all of my research do? It keeps me sane. It keeps my eye on the ball. It keeps me sure of the direction and gives me confidence that much of what is in clinical trial is what should be in clinical trial. That is not to say that there are not things that should not be in clinical trial. I can think of a few. Thankfully, though, Lunch for Life is not funding any of them.

Bottom line, what really started this diatribe this morning was what followed a few hours of research. On one hand, I am so desperate for a cure that there is never enough. But on the other hand, I am amazed by the number of people that are studying neuroblastoma. Think about it, I read over 20 neuroblastoma abstracts a week. That is at least 3 a day. That is 3 research projects completing a day and that is only the ones that are being published.

There is a mountain of research. It makes me think - Why aren't we further along? Are we prioritizing the research we do correctly? What are the real obstacles? How can we change it?

It is a very loaded question of purpose.

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