Share your perspective on PML clinical trials

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I would be willing to participate in clinical trials as a way to raise awareness about the disease and to explore any possible treatment options. There always seems to be a delay in diagnosis, perhaps due to physician lack of familiarity with the condition, and the results are usually devastating. There is very little hope of any meaningful recovery, though, aside from constant therapy (physical, occupational, speech, etc.). There also aren't many people with PML, making it difficult to reach statistical significance. The main barriers that I think of are (1) mobility limitations- I would have a hard time physically getting to a trial site, and (2) the nature of the investigation- I am not willing to undergo repeated lumbar punctures or other procedures, and since the PML is a brain/spinal fluid disease, that seems like an obvious potential target for study. My doctor pointed me toward a study, possibly by the CDC, soon after I was diagnosed 3 years ago. It required me to go there frequently and get repeated spinal taps and brain MRIs/CTs and I just wasn't willing to (or able to) make that happen. And to be honest, I have little hope that anyone will ever find a meaningful treatment for PML, so I have to question if it is even worth the effort.




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Idea No. 109