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Do you search out clinical trials?
The federal government has a website for clinical trials, ClinicalTrials.gov, a central database for clinical trials.
There is also the ALS Navigator:
https://www.als.net/als-trial-navigator/.
And this site includes privately funded as well as government-funded trials – The Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS)
Would you or do you participate in clinical trials? Why or why not (if you are comfortable sharing)?
Do you ask your doctor for opportunities, or do you expect them to bring it up?
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9 Replies
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I look for clinical trials and I also check in with my doctor. Unfortunately, I am past two years since onset so I don’t qualify for most trials. I do try to keep up on EAP though. Meanwhile, I have been taking a “PrimeC like” prescription on top of riluzole all and radacava. If an EAP should become available for me to participate in, I can wash out the “PrimeC like” prescription in a month
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Renee, what can you tell us about how your compounding pharmacy is making your PrimeC knock-off. I know the ratio of the two drugs in PrimeC but have listened to a podcast about the drug where a company rep said that sequencing the timed release was important. I don’t know how true that is.
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I would love to be in a clinical trial. But I’m at 10+ years post diagnosis. They don’t accept you if you’re over 2 years post diagnosis.
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Big Mike,
I think they held off on my diagnosis – very slow progression initially – just to keep my window of research options open.
Amanda
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I am 8 months since first symptoms, so I am of interest to clinical trial researchers. I have inquired of four and two have responded. I am seen by an ALS clinic that participates in trials, and my neurologist has a boatload of experience. Nevertheless, my experience is that they have limited bandwidth and really only know about trials that they are applying for. I have been the one that has had to identify relevant trials, read the background research to decide what sounds promising, and make the outreach. Fortunately, I have Chat GPT to look up neurology jargon and graduate training in statistics, so I have a fighting chance of understanding things. I am also wealthy enough to afford travel and have flexibility with my work schedule. Some clinics only seem to be interested in enrolling their own patients. Where I have had traction is where they were specifically looking for C9orf72 patients. I should here from two potential trials in the next week.
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I have the c9orf72 gene. I am seen at Mayo Clinic in Scottdale, AZ. I know there is drug that will be tested through the Healy Platform. It will be at Mayo, however, no specific date has been set. I am anxious for this drug because it will be for C90rf72. I am open other trials if this one does not come.
ccrone
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My husband and I are both enrolled in the ASSESS ALS research project, he as a patient, me as a control. Each month we both do on-line survey and enunciation/cognitive testing on line. Every quarter he has bloodwork and a (optional) lumbar puncture done. Each year I’ll do the bloodwork. This is a big study and they are actively looking for more participants, including for the control group. Google ASSESS ALS study for the link. If you have a center near you, it’s worth the hassle – for the future. Funding for this has so far not been cut.
He is also taking Prime C through a compounding pharmacy, Radicava ORS, Riluzole, and a gazillion supplements.
And he’s too far along for other clinical trials, plus genetic testing shows he doesn’t have the markers for other trials.
We recognize we won’t benefit from these trials, but hopefully others will.
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LandG,
Thank you to both you and your husband for contributing to ALS research. I know there is enough to be done for a pALS and caregiver without adding more tasks. My sister (different biological fathers) also participates as a control when she can. She lives in Maryland, and I live in Florida. Anytime she is here and I go to the ALS Research Clinic she volunteers for anything possible. Most people don’t know much about ALS unless it has impacted their life. Finding controls is no easy feat. I continue to volunteer for anything I can to help ALS research. The research team will share the consenting information and I sign away! At this point I’m not sure what all they are even collecting data on :). Some biological materials are frozen and saved for future research.
I’m so fortunate that there is a treatment for SOD1 ALS. I know it isn’t a cure, but thanks to people like you, your husband and my sister, QALSody is available to me. I tear up with gratitude just typing that – at work-still independent, nearly 3 years in!
Thank you!!
Amanda
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You are welcome, Amanda, and good energy to you.
We are pro-science and have been on the cutting/bleeding edge of the clean-energy world for decades. We understand that some people need to “go first” in order for others to have an easier time of it – whether that’s with solar energy or more data points to cure ALS. We want to normalize solar and obliterate ALS. 😉
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