Share your perspective on PML clinical trials

Moderator Tips trending idea Edited

First, thank you for participating to share your perspective on PML clinical trials! Your input, both in original posts and discussion with others, will help the FDA incorporate the patient voice in PML clinical trial design. We encourage you to not only post your own perspective, but to interact with other participants by replying to their posts.

 

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Share your perspective on PML clinical trials

Moderator Question #1.

What aspects, if any, of a clinical trial evaluating an investigational treatment for PML would encourage you (or the patient if you are a caregiver) to consider participating in the trial? If you (or the patient if you are a caregiver) have already participated in a PML clinical trial, what helped you/them make that decision?

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Share your perspective on PML clinical trials

PML Trial First Thoughts trending idea

PML can have severe permanent effects on the brain of patients who survive. Given the disabling effects, travel to a central site can be difficult. I think that having the trial with investigators in or visiting multiple major cities would make participation easier. If the possibility of a cure/prevention of PML were available, most patients would want to participate. The awareness of PML is somewhat limited because PML... more »

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Share your perspective on PML clinical trials

Long-term PML survivor would be willing to participate in trials trending idea

It took 5 1/2 months for doctors to diagnose me with PML, and by the end of that time I was paralyzed down my entire left side. My understanding is that if I hadn't gotten diagnosed by 6 months, PML would probably have killed me, so I was extremely lucky to beat that deadline. This is the link to the article about my case from The Washington Post:

http://www.washingtonpost.com/national/health-science/medical-mysteries-like-a-slow-motion-stroke/2015/04/20/11588492-cbe6-11e4-8c54-ffb5ba6f2f69_story.html... more »

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Share your perspective on PML clinical trials

My thoughts trending idea

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,... more »

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Share your perspective on PML clinical trials

The monster that took my husband

My husband had a successful liver transplant on July 31,2020. Ten days later he was dancing in the hospital. The ICU nurses called him a "rock star" because he was extubated and out of ICU in less than a day. All was going well and we were released from the transplant center on Sept 4, 2020 to go home to Indiana. We were excited about our future. Then on Sept. 26, my husband told me he thought I was still sleeping when... more »

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