April 14, 2020 at 4:57 am #15097Peter PowellParticipant
Hi, Is anyone on, or planning to participate in the CNM-AU8 Trial?
I have been asked to participate next month.
April 14, 2020 at 12:40 pm #15098
April 14, 2020 at 2:18 pm #15103
Where is the trial taking place, and who contacted you about participating? My wife is still early in her progression, so it would be great to get her involved with any studies taking place.
April 14, 2020 at 4:30 pm #15104
CNM-AU8 is regimen “C” listed on the Healey Center Platform Clinical Trial https://clinicaltrials.gov/ct2/show/NCT04297683?term=Platform+Trial&cond=ALS&draw=1&rank=1
I’m virtually standing in line at four of the trial locations, waiting for enrollment to open-up. It might be May, or June before that happens. Maybe later, who knows…
In any event, I just had a virtual appointment with my neurologist at MGH this morning, and she has said that she can think of nothing that should stop me from being selected for the trials, other than too many qualified people. Since I’m close enough to four of the testing sites, I’ve given my information to all four. Hopefully I now have better odds at being selected.
So, to answer your question, maybe I’ll be in a trial for CNM-AU8, but I won’t know for some time. Good luck to you! If nothing else, you’re getting some gold to wear.
April 14, 2020 at 7:36 pm #15110Peter PowellParticipant
Hi, I am in Sydney, Australia and starting the screening process on 5 May with the trial commencing a month later. The screening seems to be pretty extensive, but also baselines you for comparison throughout the 40 weeks.
The articles says that it is being conducted at various sites around the world with US included of course.
April 15, 2020 at 2:09 pm #15113
Jonathan- could you explain what you mean by “virtually standing in line?” I haven’t seen a link anywhere to register or otherwise get in line. We’re in DC, and close to UMD and JHU, both of which will be participating in the platform trial too.
April 15, 2020 at 3:00 pm #15114
If you go to the link in my comment above, there is a place to click that shows all 54 sites and has a contact name and email address for each one. I reached out to four of the contacts, and got replies back within a couple of hours from each one.
They all said something like this: “I’ve added you to my list of patients who are interested and I’ll reach back out to you when we’re ready to get started. Feel free to check back in with me at any time as well if you want an update on when we might be ready. Right now, I’m hoping for June.”
<p style=”font-weight: 400;”>It feels like I’m waiting in line, anyway.</p>
My contact at Mass General Hospital said, “All sites are autonomous in how they will begin their enrollment process. I know you live in NH so please reach out to any of the other sites close to you including one in NH and two others in MA so that you have covered all of your bases. We do anticipate much interest in this trial and want to give everyone opportunity to obtain a screening spot if they meet criteria. We expect we will hear from many, many people initially and will work very hard to enroll as best we can in a systematic way so that we run a good trial and obtain solid data.”
She was very happy for me when I told her I had made contacts. I feel like this is a train I want to get on, and if I can’t make it at one station, I’ll try the next. When I mentioned this to my neurologist, she thought it was a great proactive thing to have done, but also said she really would like it if I could stay at MGH for the trial because of a couple of things. One, we could have appointments on the same day saving me travel time. Secondly, has a sincere interest in me, and can follow what’s happening more closely. I hope I can, too.
April 15, 2020 at 3:40 pm #15115
It’s hard to find the locations and contacts listings. Here’s what you need to look for: “Locations” “EXPAND tr-showAndHide” title=”Show 54 study locations”></span>
<span id=”EXPAND_CONTROL-Locations” class=”EXPAND tr-showAndHide” title=”Show 54 study locations”> Show 54 study locations</span>
Click on the that, and it will expand to show you a lot more. They really bury it, and it’s unobvious. Let me know if this helps.
April 16, 2020 at 2:07 pm #15123
Thanks Jonathan- that definitely helped! I never knew you could expand the contacts list in the studies. Fingers crossed the trial is able to start soon!
April 16, 2020 at 3:31 pm #15122
Sorry, I just looked to see that the copy-job I did came through in HTML language.
All you need to search for and click on is:
Show 54 study locations
Did you find it, Owen?
April 16, 2020 at 7:13 pm #15126Terri stephensParticipant
Where are you located? I would like to get in on this trial if location permits. I’ll go look for locations
April 23, 2020 at 4:04 pm #15164Diana BellandParticipant
Last Sunday, I reached out to two of the 54 study locations that are located within 80-90 miles of my home city and was pleased to receive replies from each the very next day. Upon receiving my email with answers to his three questions (1. when did you first notice muscle weakness, 2. what is your SVC of FVC, 3. can you swallow pills and liquids), the clinical research coordinator from one of the sites responded to me again, saying that I sounded like a “great candidate.” He indicated that he will contact me once they are ready to invite patients to screening visits.
I’m grateful to Peter Powell and to Dagmar for their posts on CNM-AU8 which happened to catch my eye. I might not have learned of this platform if not for this forum because I don’t visit clinicaltrials.gov as often as I used to. My four previous attempts to enter trials have failed due to procedural delays and issues with funding which have impacted the research sites. Let’s hope that the start of the Healey Platform trials will not be impacted too severely by Covid-19.
I hope everyone who’s interested can find a study site that is conveniently located.
June 3, 2020 at 5:48 pm #15493
June 4, 2020 at 6:57 am #15494
Hi Danielle- My first and main question is, have you noticed any improvement?
June 4, 2020 at 4:07 pm #15498IgorParticipant
the Healey Center Platform Clinical Trial is a very specific. It is not possible to choose drug (rigment) you want.
They’ll use randomized dividing between drugs and it will be double blinded trial too.
I tried to reach Robert Glanzman to find out their plans of clinical trials in US, but I couldn’t.
June 4, 2020 at 4:34 pm #15499
June 4, 2020 at 7:32 pm #15501IgorParticipant
Can you share this message to me too?
I think to take part in clinical test in US.
They wrote “repair-ALS” and it is interesting to find out more about this drug
June 4, 2020 at 9:34 pm #15503MargaretParticipant
What about us here in Canada. I’d be willing.
June 5, 2020 at 11:41 am #15500WattiParticipant
Well – I am stunned- my friend applied for and was selected for this trial (Brisbane, QLD, Australia) in March- and was due to have her first ‘dose’ (of drug, or placebo) – in the first week of the Covid lockdown…so NO trial drug for her! The hospital suspended its trial/s due to Covid- with NO renew date! This has meant my friend has been progressing without any hope of delaying/ arresting progress of the disease. I would love to know how any of you- and please, please state where in the world you are based- a lot of us are not in the USA… – so please add where in the world you are applying/ receiving the trial drug (or placebo!). We are desperate.
Im not sure how to add that email @ thing as you have done above- I will try. How do I contact you guys if it just says @terris , etc???
September 4, 2020 at 11:27 am #16268Jane KriskeyParticipant
There are so many trials going on now it is hard to figure out which are best, My daughter is starting a trial for Clenbuterol next week and I was happy about that, then I read about others and I think this one sounds better so we are a bit confused at this point. This one does not have a placebo, which we like and it is a pill. So I hope they all work but right now we are on the fence. I just hope they come up with one they all agree on after these trials are over and they do it quickly. Some are drugs already on the market for other things and I wonder so why can’t she take them, they are safe and might be something that she will benefit from. So again, back to square one, what to do??
September 4, 2020 at 8:39 pm #16272
You are right that there are many trials going on. You need to do your homework and look at the trial you’re considering your daughter for and the possible benefit vs side effects. Her neurologist should be able to tell you what each trial is targeting in regards to ALS. Also look at iamALS.org. They’ve built a nifty database that lists every trial going on. It’s brilliant. They are also trying to push two bills in Congress to get promising therapies to ALS patients sooner – they need every person in the USA to advocate this to their local senators
If you do a google search on Clenbuterol and ALS, you will see this is not something new. I’d encourage you to do your homework.
None of the current trials are a cure (unfortunately). They are simply looking at ways to treat the symptoms by extending our life. There was an Ask The Experts webinar in Australia recently which covers some of the current trials (fast forward to the session by Gethin) https://www.facebook.com/mndnsw/videos/2590214314625812/
I’m happy to discuss my experience with CNM-Au8 I’ve been on the trial for 7 months now. I’m due to finish up in October. DM me and I can give you my updates.
Personally If I was located in the USA I would be enrolling into the Healey platform trial. It has the most promising therapies and is a world first approach. Less chance of placebo.
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