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NothingButLove

Distinguished member
Joined
Dec 25, 2016
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106
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
City
Anaheim
The clinical research coordinator at UCI MDA-ALS & Neuromuscular Center emailed my wife and said:
"I wanted to let you know that all the results are in and you qualify for the NP001 ALS trial! We are very excited to have you participate and sincerely appreciate your effort!!

As I mentioned before, the first infusion will occur over five consecutive days and takes between 3-4 hours per visit. The infusion itself will only take one hour to complete followed by a two-hour observation period. The very first infusion will be closer to 4 hours because we need to complete pre-dose assessments and wait for pharmacy to prepare the study drug. The first infusion cycle needs to begin the week of May 1st which is next week."​
This will be our first clinical trial. At first I was against the idea of clinical trials. Now, I think it's a good idea to participate so people in the future might get some benefit. Also, it's another reason to get out of the house which is always a good thing. UCI is the clinic my wife normally goes to and it's close by so it's not a big hassle.

I'll post updates as the trial progresses. Wish us luck.

Rob
 
Good Luck

Keep us informed I hope it all goes easily for you.

Wendy x
 
Best wishes with the trial! Brian did not have the elevated blood factor needed to qualify. We would have done it if he had.
 
Good luck and please tell your wife THANK YOU for participating!
 
Good luck to both you and your wife...Keep us posted. Lorrie
 
We got through day 1. It was pretty boring. They asked her a bunch of questions about breathing, eating, mobility, etc. Then, they started the infusion. We got there at 1:00 PM and left at about 5:20 PM. It shouldn't take as long tomorrow because they don't have to do the base line assessment. We'll see how it goes...

Rob
 
I have been in the NP001 study being done in Charleston for the last few months. All I can say is I have no problems at all. Being a double blind study I do not know if I have received the drug or placebo. I did have one bout of tingling and mild burning upon the first infusion. Good Luck and Lets Keep the Fight Going!!!:p
 
Good luck on the trial. Hoping for the best.
 
In the first NP001 trial, a lot of participants recorded data and side-effects at plm. A burning sensation seemed to correlate to those who got the active drug. Best of luck and thanks to everyone in the trial.

When I last looked, it was still enrolling at 22 sites in the US and one in Canada.
 
My husband had his first round last week. So far he has more energy than normal so we are hopeful he got the drug. He experienced the slight burning sensation as well, and I had read that as a symptom of those who got it previously.
 
by the way this drugs NP001 look promising very interesting to know the update thanks everyone for posting
 
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