I am a big reader of research, or at least the abstracts of research articles, since consumers are often charged upwards of $30 per research article (although our doctors can get them for free). So, I read my abstracts, keeping an eye on anything that is helpful now or that I need to tuck in the back of my mind for later (hopefully never).
But where do I find this research? And, how can we make a difference in what research is published?
Submit Research Questions
Have you ever had a question about MPS that you only wish someone would look into? For many of the MPS subtypes, there is a registry or database of information on hundreds of patients and their condition, surgeries, tests, etc. over time. For Hunter Syndrome, it is the Hunter Outcome Survey or HOS. My understanding is that doctors can query these databases to answer questions, look for trends, and analyze the data, and then can write research articles (that then end up being searchable by us on PubMed…) about what it tells them.
Us parents, however, do not have access to this data, and trying to make that happen is a different question altogether that I won’t reach today.
But, I would love to gather our questions, our ideas of what we would search for if we could mine that database. I’ve had many over the course of the last few years since Case was diagnosed. My hope and goal is to eventually create a permanent page where clinicians could actually see issues are really relevant to families when they live the life of MPS. This won’t be possible unless you comment and submit your questions, so please ask away!
Research Q#1: What percentage of MPS II boys go on to have elevated intracranial pressure (hydrocephalus), at what average age is the elevated pressure detected, by what methods is it detected, and the range of intracranial pressures measured?