Good morning! Ah, there is nothing quite like the feeling of being home. As always, my trip was fruitful and wall to wall with new neuroblastoma information. It is always a reinvigorating experience and it solidifies, in my mind at least, that we are moving in the right direction.
I have had many, many (50+) emails asking me for information about what transpired during these meetings. Trust me, I understand your enthusiasm. The problem is that I have to walk a very fine line. First, you should know that my purpose in these meetings is to inform the research process with the patient perspective. My job is literally to go fight for what I believe is important to children with neuroblastoma. I am there to help them remember who everyone is fighting for - not that they need a lot of reminder (this group gets it). My presence at these meetings is by invitation and for that privilege I pay by signing a non-disclosure agreement. The purpose of the non-disclosure is to protect the intellectual property and unpublished research information. I want to be clear on this topic, however, it has nothing to do with "hiding" information from patients.
To be a good advocate, it is my duty to truly understand the research and issues surrounding each study. Frankly, most of my insight and most of my knowledge comes from having to understand the information inside and out so that I can fight for what I believe is in the best interest of our kiddos. For this purpose, I study the preclinical research for each study thoroughly. I review the medical literature. I ask questions. It is this exercise which helps me understand what the key points are about any clinical trial. It isn't that I am exposed to any secret response information. In that sense, I am not exposed to anything that would necessarily benefit a particular patient. In truth, no one really is. Much to my frustration, patient response data is blinded to everyone including the principal investigators until a trial has closed. No one truly knows how the trials are doing until they are finished. We are, however, exposed to safety and toxicity data (i.e. what toxicities the patients are experiencing.) but this is no different than the information that any patient or parent would receive if they put there child on a trial.
I guess what I am saying is that I don't have any more secret information than a typical patient would receive if they were thinking about participating in a trial. I do though, have a more thorough understanding of it than most. That is not because I am smart. That is because it is my job.
What I do get, is an in depth education of all of the information. I study it. It is this in depth study of each trial that gives me insight. This foundation helps me better understand the mechanics of each trial and get a better grasp of exactly what is going on. I am never provided any specific information that would benefit a patient and I could tell you that if anyone of us were, researchers and physicians included, we would fight to ensure that that information made it out to patients. It is not "secret" information. It is education that can make the difference between life and death.
There are no conspiracies - just a whole lot of very dedicated physicians and scientists who are fighting very hard to help our children.
Don't forget that.
With all of that being said I am finally in a position where I can talk about the meeting Unfortunately, today I am running out of time. So, we will need to wait until tomorrow. In the meantime, rest assured, good information is coming.
There are many who share our purpose.