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Volunteering to participate in ALS research: what are your pros and cons?
For many ALS patients, volunteering to participate in ALS research is a “no-brainer” – – just do it! For others, the decision is difficult and filled with pros and cons.
The decision to participate is an altruistic one that can carry risk, usually offers no direct personal benefit, yet contributes to the collective knowledge about the nature of the disease, its progression, and how to treat it. Often research opportunities are limited to those in their first 1-3 years of the disease, so decisions about participating have to be made quickly and can feel overwhelming.
What are your pros and cons about volunteering for ALS research? If you have participated, what advice can you share about your experiences?
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10 Replies
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Interesting topic I’m about to enter in a study but I’ve always been curious to listen to the experience of others.
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I do it for my children, nephews, nieces and grandchild.
With familial ALS, I have no thought that these trials will do much for me, but anything I can do to advance research that might help them, well that gives me peace of mind.
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I was diagnosed with ALS in July and just entered a clinical trail as part of the Healy Platform trial. I have no illusion that this trial will help me personally but if I can contribute to the research that will help those that come behind me then all good. It is a weekly infusion that takes about 2 hours so between going to the hospital and back and the treatment itself, it pretty much takes up a big portion of the day. It is important for me to contribute what I can to society while I can and to demonstrate fight and strength against this disease. My family and friends acknowledge the power of not going down without a fight which is huge for my metal strength.
Cons – Really the only con is the time it takes for treatment and as its an infusion that has to be administered weekly by a nurse, our travel options are limited to 7 day or less trips.
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Hi,
I am in a courage trial in St Louis. I went to Columbus Ohio for an ALS walk that my Ohio family started. I went to the Ohio State ALS clinic and gave them blood and skin. They tried to get spinal fluid, but my arthritis’s was to advanced they could not get it. I was going to give them some muscle also. They thought that was too much for one visit. I want to crush this disease and the best way is to help research. These clinics are really important to beat this disease. They need our help!
There is probably a clinic close to you.
Hopefully this link will help you find a clinic close to you.
Search of: ALS – List Results – ClinicalTrials.gov
Let’s get to work to kick this diseases butt!
Jerry
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Jerry,
That’s awesome that you have made so many contributions!! Thank you ! Everything helps.
Amanda
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I’m a family member of an ALS patient so I hope you don’t mind my offering my thoughts. We lost my dad three years ago, at age 89, due to an unrelated condition. He had been symptomatic bulbar form for only 4-5 months and got his diagnosis about a month before we lost him.
Those last couple of months he kept telling me that he really wanted to do anything he could, including donating his body, so others might not have to deal with this disease. I began making phone calls and sending emails to a number of research hospitals, hoping to donate his body.
Unfortunately, I learned that there is somewhat of a long leadtime that’s involved. I guess there are a lot of factors, and time, involved in this type of donation and acceptance.
Hope this helps those who might be thinking of this type of research assistance.
Steve Landis
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Steve,
Thank you for your input and sharing information. It’s very helpful. I’ve been volunteering for the pre-fALS study for about 12 years now at the University of Miami. They have a form to fill out to donate your body for to the ALS clinic. I don’t know if this is only for the participants in the study and for those pALS that attend the ALS clinic or not. I’ll look on their website and see if there is any other information.
Amanda
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This list doesn’t necessarily represent my personal views and opinions. But to add to the discussion, these are the “cons” or reasons I’ve had other pALS share with me as to why they don’t want to participate in ALS research:
– the research center is too far away from where I live.
– I don’t want to experience potential side effects.
– I don’t want to quit the medication I am on now in order to participate.
– If the experimental treatment works well, I might have to stop taking it while the results are being analyzed.
– I would want financial compensation for participation and use of my “body” for the study.
– Researchers only want to study pALS in the first 3 yrs. of their ALS. I am beyond 3 yrs.
– I am doing OK on my current medications. Why “rock the boat” taking something new?Do you have any other negatives to add to my list? Do you feel these are valid reasons?
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My goal for any trial is to first utilize the best available medicines, then join a trial that is targeted at my type of ALS (Bulbar). Why the University Doctors are more concerned about the “purity” of their guinea pigs is beyond me – it’s a big ask to stop taking something that prolongs your life for the betterment of mankind. In fact, UCSD ALS Clinic told me that being on Riluzole and Radicava were OK for their trials and offered to get me “stable” on RadicavaORS before signing up for a trial, and then failed to deliver the Rx. Thankfully, I found another doctor that followed through. Now, I want to get “stable” on RadicavaORS and AXN0035 before considering a trial. Is this selfish? Or just sensible?
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I was diagnosed in May 2021. I have been volunteering in the A02 Oral Radicava study since January 2022. My upcoming visit will be my last visit for the study.
I am of the same mind that research is my contribution to assisting the clinics and medical staff to finding a solid treatment and/or a possible cure. I’ve been poked and prodded, MRI’s from one end to the other, contributed to two lumbar punctures, multiple type of blood tests, etc.When this study is done I’ll be looking for another to help out where I can unless I get in to the open label study of the Oral Radicava.
My best to all and keep up the good fight!
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RadicavaORS is commercially available, but at a cost$$. There are copay assistance programs from the manufacturer and others, and commercial insurance offers good coverage in my case.
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