To (Research) Study or Not to Study?
We received a phone call yesterday, with an invitation for Zax to come see if he qualifies for a new Food Allergy Clinical Research Study.
I was excited at first. I’m an analytical person, and I enjoy participating in the research process. I also like knowing that we’re on the cutting edge of food allergy treatments. Having access to experimental treatments is neat, but is not without risks or pitfalls.
So much to consider for a Research Study
This study is a doozy though. For one, it’s four years long–that would be the longest study we would have done. It’s also strange to think that my son will be almost 15 when it’s over. It’s also very complex, with multiple different phases.
Unlike other clinical research we’ve participated in, this one seems to be in an earlier stage of development. That means that once it’s over, we may not have a clear path towards maintaining any benefit Zax receives from it.
This sort of research is important. Human studies have to be carefully crafted to make sure that new drugs or treatments have the desired effects. Gathering enough data to be able to prove that the treatment will benefit most people, with side effects that are within the range of “acceptable,” takes many years to complete. It’s inevitable that early research subjects will be without treatment again before the treatments come to market. But that doesn’t mean it’s easy to be one of those research subjects. In fact, the thought of putting four years of effort into increasing food allergy tolerance and then losing it all is, well, terrifying.
The other difficulty is that this study would involve a lot of needles–and needles and Zax don’t get along. At the end of his last study, I literally had to hold him still for blood draws. And he hasn’t gotten better at shots or blood draws since.
Passing the Torch
Of course, this isn’t really my decision anymore.
Read the rest of the story about the study and our decision on our main blog here!