March 17, 2007
Ataxia Adventures: Clincial Trials
(Bear with me on this - it will get torts-related, I promise.)
My father suffers from Spinocerebellar Ataxia, which is a neurodegenerative disorder -- i.e., parts of the brain degenerate and stop working properly. In his case, it causes balance trouble and problems with things he does by rote -- not things like breathing or involuntary reflexes, nor his ability to reason, think, etc. but things like walking or talking, especially about subjects he knows very well. His two surviving brothers also appear to have it, and the best evidence is that his father did as well.
It is almost certainly genetic, though the specific genetic marker for his version has not yet been identified. And so I have a strong likelihood (probably 50%) of having it as well. It typically presents in one's fifties. Nobody in my generation has reached that age as yet, and nobody has presented symptoms that we know of.
There is presently no known treatment, nor much understanding of its cause, and presently, if it's not one of the ones for which they know the genetic marker, the only way they can diagnose it is by examining parts of the brain microscopically.
Today I received a letter from a physician I've seen at the Massachusetts General Hospital who is one of perhaps a dozen of the top experts in the field. He is conducting a research study, "Can the Arginine Challenge Test Distinguish Cerebellar-Type Multiple Symptoms Atrophy (MSA-C) from Other Forms of Cerebellar Ataxia?" and the letter invites me to participate. I am inclined to do so. And since medical studies are a fairly frequent item on the blog, I figured I'd document it as it proceeds.
The study will "test [my] response to the intravenous injection (given through the vein) of two different drugs that cause a brief surge of growth hormone in [my] blood. [Ed. note: Good thing there are no tests for performance-enhancing drugs for law profs.] The two drugs that [I] will be given, R-gene 10 and Geref, are both approved by the [FDA] for the diagnosis of Growth Hormone deficiency. No experimental treatment or devices will be used in this study."
The letter also notes that I "may not receive any personal health benefits as a result of your participation in this research study," though I will get $100 and free parking. The letter discloses no risks, though I am certain there are multiple disclosure forms in my future. The letter also emphasizes that participation is not required for keeping the doctor as my physician and that choosing not to participate will have no effect on my treatment at Mass General.
More to come as it proceeds.
March 17, 2007 | Permalink
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I will look forward to reading your posts on this, Bill, and hope the research is productive and illuminating. With the growth hormone surge, you may be accused of cheating by those people with whom you play family basketball games on the driveway. All the best, Nancy
Posted by: Nancy Levit | Mar 18, 2007 4:36:15 AM