Clinical trials...

[anaishunter]

My MS doctor suggested that I joined a couple of clinical trials. One at our first visit that just about tracking MS progression and Ocrevus results through the year. In my last visit, he suggested a trial of fatigue drugs (known drugs that have been used for other diseases.

There's actually of government site with all open trials. You can search by disease, location,....

clinicaltrials.gov/

I've signed myself to the Brain Health Registry (clinicaltrials.gov/ct2/show... to track cognitive evolution because I believe this is where MS is affecting me most (more than physical). I like it in that they ask you to provide a "buddy", someone close to you who can also report as a 3rd party on your evolution.

Just sharing in case anybody is interested.

[rjoneslaw]

Thanks for the info

[erash]

The brain registry study looks interesting. Thanks! For sharing. I’m curious about the partner/buddy. Can u tell us more about that? Is it a researcher or a health provider or another MSer?

[anaishunter in reply to erash]

This is how the study describes the study partner:

"A person who knows you well, like a friend, family member or spouse. Your study partner is a person who agrees to participate by answering questions about you."

I asked my husband to be my study partner. (note that I find it really hard to evaluate my own cognitive/memory progress which is, in my case, where MS has impacted me the most).

[erash in reply to anaishunter]

Idk

My husband told the neuro my cognition was better

I don’t tell him each time I’m distracted and can’t remember what I was going to do and he’s gotten use to the clip board I carry around with my lists 😜

[lbenmaor]

Thanks for sharing.

Best Regards,

Leslie