My husband is entering the UCSF Clinical Trial for CBD this week (in California). He's going to meet one of the doctors who's an expert in the field, who will do an assessment (with his previous MRIs) to decide on the first day if it's likely CBD or not. If yes, then they run a whole gamut of tests: an amyloid PET scan, a TAU PET scan, and another MRI, plus an eye check.
Is there anything we should be sure to ask about? All the things we really want to know even the best expert in the world probably can't tell us.
- Lost
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LostinHeadSpace
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I don’t have any advice but just encouragement! We are trying to get my husband into a clinical trial as well. Meeting with Dr. Boxer in January at UCSF. Prayers coming your way!
Good luck with the assessment and the trial. Hope treatment is helpful.
Only thought I have is to perhaps bring brain donation into the conversation and do it if your husband is willing. Is one regret I have that mine never even gave it a thought.
Unfortunately in the United States brain donations cost the family donating the brain. I investigated it. The price was $1500. Seriously? You want brain tissue you pay for it.
Please read CARO 2132 (below). In a recent post by someone else, Robin Riddle gave info on brain donations. Robin is MORE THAN A MEMBER OF THIS SITE. I believe she works for the PSP Association.
LOST IN SPACE, I just researched....the POST. The title was WHAT ARE THE ODDS by Jkhakh2. In that post Robin Riddle responds with the web site and information on brain donations.
Hi Jeff - I don’t think that’s right. I know a monetary donation is requested but I don’t think it’s mandatory. The brainsupportnetwork.org should have info or Robin Riddle is a great resource. She’s a member of this group.
Sincerely hope your info is incorrect, that would essentially put a grinding halt to that kind of research.
The cost depends on if the doctors are doing research or not. My wife donated her brain to a group in Houston Texas who focuses mainly on research, but does meet with patients only one day a week. There was no cost to us and no request for a donation. They did the autopsy and the senior doctor of the group met with me to review the results of the autopsy. It confirmed the various amyloid and Tau PET scans that were performed on her a few months before her passing.
Since they know this a progressive disease ask them how long the study is going on for, what happens if the person can no longer make it to the clinic for the study (will transportation be provided at that point), will any new experimental medicines be used and if so will they be coordinated through his primary doctor. Last thing I can think of is what happens when the patient can no longer communicate wishes about the study.
I echo Jen on brain donation and Margarita on checking out Robin Riddle's org: she is a trustee of the Brain Support Network and created it after her Dad's experience with PSP. They support brain tissue donation. She/it operates out of the Bay area in CA, so should be a do-able hookup for you.
Thank you all for the kind words and help. This group has been what makes us feel like we know what's out there. I can't imagine blundering through this disease without you all.
Can’t Believe you have to PAY to donate. I have CBD ,in the UK, and have already got my card to donate. As far as I’m concerned, they can have any bits they want so cures,treatment can be found. I’ll be gone so what the heck! Important they have a brain for research.x
Hi Lost-- encouraging to hear that a major medical center is focusing on CBD. What is the focus of the trial? Is it a pharmaceutical, or a different kind intervention?
I think the focus is primarily to measure the progress of the disease. Our neuro tried to get approval for my husband to see the CBD expert . . . but our stupid normal American insurance said nope. What the neuro said was, I'd really like to get her eyes on you, so she can decide if it's really CBD. Plus, the insurance turned down the PET scan, and this trial includes 3 types of scans. So. .. . I don't think the trial is necessarily expected to do something, but to learn something. At least in the benefit for us.
We had the same problem with our insurance company even tho we had a PPO. But the minute he was eligible for Medicare it was all covered: all scans and all other diagnostics.
We did a study with U of Penn. it’s over now but they tested my mom every 6 months for 2 years. They did PET, MRI, lots of cognitive tests. They are looking to see the changes as progression occurs.
There was a drug t-287 I believe that was for psp patients but hopeful it could have been used for cbd patients. Unfortunately there were set backs in one of the stages of trial so it’s no longer promising. They will most certainly ask you for a brain donation and provide you the info. As soon as your loved one passes there are steps you have to take immediately so the paperwork was robust but we aren’t considering it so I didn’t go through it.
Good luck. They should be a wealth of information on where you can turn to for help. And give you a rough timeline on progression. It will hopefully help those diagnosed with this terrible disease in the future.
Your post is good to see. I was always disappointed that there were no clinical trails in the US for CBD. There were a couple for PSP, but my wife never qualified. The only research they did on my wife were a number of experimental imaging studies, even using me as a control on one of them.
Thank you for being a part of studies to better understand and treat CBD.
We're so overwhelmed with just keeping up with life and jobs and kids, that I can't say we're doing this for science and posterity, but more to learn what we can. . .
We had been in studies at UCSF for a few years.(PSP) All the folks there are wonderful and try to help as much as they can. Unfortunately, this last study just ended in disappointment. I hope there is more success with yours.
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