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What are your opinions and thoughts on volunteering for ALS clinical trials
As a pALS, or pre-fALS, have you considered volunteering for clinical trials and medical research? If so – why?
If you volunteer for a clinical trial is it because you have the desire to help in the research so that it may benefit the ALS community? Is it because you are hoping it is a cure or a treatment with positive effects (likely because of both)? What are your thoughts on volunteering for a blind study and not knowing if you were getting a placebo or the treatment? What if the treatment was difficult like chemo or intrathecal administration? What limits or boundaries do you have?
What are your thoughts?
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8 Replies
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I signed up for a phase 3 trial of a drug called Rabuluzumab. I did it because I’m early in the disease process and I hope if I am getting the drug (and not the placebo) it helps slow the progression. I don’t want to just do nothing so I’ll take any opportunity I can get.
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I would be interested if I knew more details about the study.
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Trevor, which study would you like to know more about?
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Hi.
I would volunteer for clinical trials (so far I’ve been rejected), first for my own benefit and then for the ALS community.
Even, if I received a placebo, that would be fine. The Healey Clinical trials that I’m familiar with allow you to get on the real medicine after a certain amount of time.
I would prefer Phase 3 trials, less invasion is also preferred. However, for me and maybe other ALS patients, the world is flat. So, trying anything is better than the inevitable.
As a side note, the Healey Clinical trials are looking for volunteers.
https://clinicaltrials.gov/ct2/show/NCT04297683?term=Platform
Richard
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I have been tried to get it to clinical trials but with by vital lung capacity at less than 50% and having been diagnosed 2 years ago I don’t qualify for any of the trials that I’ve seen. at least none in the midWest. traveling now would also be very difficult
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I signed up for clinical trials but so far they only contacted me for a fatty liver study, diabetes, and a kidney study but they said I was not qualified for any of them because I was a pALS.
But they do have my name and number!
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I was diagnosed about 6 months ago. I have signed up for the Healey Platform trial and will begin in early May. If given a placebo, I understand I will be able to try the medication after a 6 month study. While I’m hoping to benefit, I also think doing what I can to benefit the community is important to finding a cure someday. I do have a limit in that I do not want to deal with side effects the likes of chemo treatment. Each day is a gift and feeling well, as best I can, is important to both to myself and my spouse.
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Ellen, I think that is wonderful. I agree, there are limits for what someone can or is willing to do. I struggle with the lumbar puncture for the pre-fALS study. I know they get better data from that compared to bloodwork, but I’m just terrified so I’ve opted out so far. I’m thinking about that for the future because of the benefits.
Thank you for participating and please let us know how things are going. Also, thank you for participating. It’s not an easy decision and some of the trials are not easy either.
Amanda
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I began the Healy Drug trial in 11/2020 & was randomized to Zilucoplan. My reason for signing up was probably the same as most. The chances for receiving the actual drug were much better than other studies and even if I didn’t receive the drug, hopefully my participation would help someone else down the road. I also agreed to do the 2 lumbar punctures that were part of this particular drug study. I finished with the study 1 week ago and did not have any noticeable side effects from taking the drug so I have chosen to continue on in the OLE (open label extension) where I know for sure I am getting the drug. My progression prior to the study was fairly slow and I feel that it has remained slow while taking the drug. The OLE will continue for 52 weeks and my Dr. said it could be in definately if my progress remains slow. Of course they (Healy trial scientists) could stop the study at any time if they feel that the drug isn’t doing any good so we’ll see what happens.
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I’m enrolled in the Healy platform trial with predopidine. I entered for the same reasons as Curtis. I’m in week 10 and have had no side effects. A side benefit is the meetings with the research team, a terrific group of people. They conduct various measures of muscle strength, FVC etc. This gives more data to determine the “progress” of my ALS. So far, I’m doing OK. I highly recommend participation.
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I’ve been on the Healey Platform Trial for close to a month, randomized to Regimen A, Zilucoplan. It’s a daily injection, which I find challenging, but I’m getting used to it. I’m grateful for being accepted, and haven’t had any change in my function, plus no side effects. I did opt to have the first of two spinal taps. For no obvious reason, I developed a complication afterwards. I had a leak of spinal fluid, through a hole that occurred, and it was resolved by a procedure in the hospital, called an epidural blood patch. The severe headache then completely went away and I was fine. I’m not sure if I’ll be having the second spinal tap, but I’ll be talking to my neurologist about it next week, to see what she thinks.
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