Our goal at the Chromosome 18 Clinical Research Center is to answer these questions. We want to be able to tell families exactly what to expect and how to deal with complications if/when they happen. Eventually, we want to be able to prevent complications from ever happening in the first place!
However, research is a time-consuming process. If we want reliable data and solid, publishable conclusions, we have to go about it the right way. Since families are an integral part of this process, it is important that they understand how things progress. In a series of posts, we’re going to discuss the various steps on the path towards treatment.
I'm looking forward to reading this. and to being told what we registered families can do to help with all that the medical team are trying to achieve. Note to self - for heaven's sake Sara get that paperwork collated and off to Texas!
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