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Clinical trials
I find it amazing that there are never any trials to participate in. I search all over and see nothing, This is frustrating and also very confusing. I am beginning to wonder if they even exist. One would think that after a few years of searching I would find one that is accepting people. They are either old and finished or filled up. I guess it is a waste of time.
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11 Replies
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Hi thee, I don’t know where you are writing from, but I would think that every ‘certified’ ALS Center can point you in the right direction. I URGE you to find one, as we ALL benefit by as much participation in clin trials as possible. There are MANY out there, some simple with others quite complex. IF you have any difficulty finding one through your ALS center, try one of the larger and active centers: 1] Healey Center at Mass General; 2] Johns Hopkins in Baltimore; ] Emory Univ in Atlanta. Good luck! If you answer where you live, someone on this site can help you find something close.
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Have you looked into the Healey ALS Platform trial at Massachusetts General Hospital(Harvard). Here’s the link: https://www.massgeneral.org/neurology/als/research/platform-trialĀ I don’t know where you live, but their clinical trials which are testing multiple drugs at the same time, are recruiting and trials are going on now at 53 sites across the country: https://www.massgeneral.org/neurology/als/research/platform-trial-sites
Contact the Healey Center by phone: 833-425-8257 (HALT ALS)
Email: [email protected]My husband participated in the Healey trial for one of the drugs and is now receiving active medication through their open label extension program. We live in Northern California and are near a trial site.
You probably know about the ClinicalTrials.gov site and this map shows where many clinical trials are being conducted across the US: https://clinicaltrials.gov/ct2/results/map/click?map.x=368&map.y=349&recrs=a&cond=ALS&mapw=1620
Finding the appropriate clinical trial is a daunting task and I wish you well in your efforts to find one. I hope this is helpful.
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Or try this search site from the ALS Association
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Most of the clinical trials are conducted in USA or Europe.Ā They don’t accept patients from outside US or Europe.Ā So there is no chance for patients like me living in Asia to benefit from these trials. I have contacted many of them presently recruiting patients but all of them refused to accept me as I was not in US. One of the trial on stem cell offered me to come to Dubai for the injection and askedĀ me to pay $ 27000. Ridiculous.
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I have looked at a number of trials, however I am inMontana and the travel is a headache. I have also found out because I am 18 months past being diagnosed makes me ineligible for all the trials I have looked at.
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Trials now all seem be limited to newly diagnosed. I always ask but having ALS for 5 plus years rules me out. Ā Only ones I found were the very limited phase 1 testing human tolerance. I do try to contribute by participating in every survey I can find and the ALS TDI precision medicine program.
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I live in New Zealand and also do not have access to clinical trials. Ā Although, since researching the internet, I probably wouldnāt participate due to the 50/50 chance of taking a placebo. Ā I instead read with interest trial results and try to work out whether the drugs might be right for me. Ā This is a costly exercise as most drugs are not prescribed in NZ. Ā It is also a hit and miss exercise as I donāt know exactly what type of ALS I have and getting an exact diagnosis here is like hitting a brick wall. Ā It is astounding the lack of resources and knowledge on this disease and I am fraught with anxiety as it worsens.
I recently found a website āstuffthatworksā. Ā We can all share our experiences and see what meds are working for others. Best of all it is a database so everything is categorised. You can ask questions and everyone is asked to answer. Ā I thin it would be good for everyone to join.
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Hi Lisa. I’ve just joined āstuffthatworksā on your suggestion. I also think that it’s a good website that we could all benefit from. So I share your recommendation for everybody to join in.
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Lisa and Sava,
I would be careful trusting sites that encourage “crowd sourcing” treatments for ALS (or any serious condition). Bypassing medical advice or second-guessing your physician’s recommendations to turn to complete strangers, without medical experience …?? why?I took a look at this site, the ALS category is (quote) “not developed yet.” Seems they are waiting for members to share their so-called advice. Sounds like an opportunity for scammers and those promoting unproven “cures” to take advantage of desperate pALS.
Better to join a site like Patients Like Me https://www.patientslikeme.com/ where information is monitored.
On a related note: Friends Don’t Tell Friends How to Cure Their Disease
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Indeed, I might’ve acted a bit naively there. Still young though š I’ve also joined Patients Like Me sometime ago, trying to find answers wherever I can. None of them really helped so far, but in the future, who knows.
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I try also but Iāve had symptoms for four years and was recently diagnosed with ALS in Oct 2020. Ā Iāve been excluded from trial Iāve applied to. Ā It seems the drug companies donāt care about PALS who have this disease for years. Ā We just have to suffer in silence.
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Daniel,
Here are are few opportunities for those of us over the “3-year” cut-off mark:With Clinical Trial Criteria, Weāre Stuck on the Outside, Looking In
For the past three years, Iāve been participating in the ALS Therapy Development Instituteās Precision Medicine Program (PMP) https://www.als.net/precision-medicine/. Every two weeks, I complete an online medical and lifestyle history survey, plus an online ALS Functional Rating Scale-Revised. To assess my voice, the PMP lab computer calls my phone, and I read five different phrases aloud, then hang up. Itās easy to do, everything is done online, and I am helping the institute in their quest to discover new targeted treatments for ALS and make clinical trials faster and more efficient.
Iām also enrolled in two voice studies. The first is sponsored by the nonprofit group EverythingALS https://www.everythingals.org/research. This study aims to create a high-quality database of speech data for early detection and improved diagnosis of ALS. The second study is Project Euphonia https://sites.research.google/euphonia/about/, sponsored by Google, which has the goal of helping teach voice recognition software how to better understand atypical speech.
If you feel excluded by clinical trial criteria, donāt give up. There are many other opportunities available. I’d be happy to offer other suggestions on how you can help ALS research.
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I was diagnosed in January 2021, and officially first had symptoms in May of 2020. Ā So most trials would exclude me after two years from onset. Ā I get my ALS care at Stanford in Palo Alto, CA. Ā Right after diagnosis I was immediately enrolled in a trial for Rabuluzumab, but after about six months they stopped the trial because preliminary data showed it had no effect. Ā Then I did some research and found the Healey ALS Platform trial has a site at the Forbes-Norris Clinic in San Francisco. Ā I contacted them and long story short, Iām in Regime D (Pridopidine)Ā of the Healy Trial there. Ā My husband and I have to drive four hours each way and there is very little in the way of travel reimbursement, so for many this would be a logistical and financial hardship. Ā Do I think its worth it? Ā I felt compelled to do something with such a serious diagnosis, and time was of the essence. Ā I am still progressing with both bulbar and limb symptoms, but maybe Iād be worse? Ā In any event I feel good about doing my part for science to find us, and those who are diagnosed in the future, some hope.
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Hi Katie. Thanks for sharing the info. Great that you’re able to participate the trial. I hope that you’ll be able to experience a greater positive effect soon.
I was just wondering —Ā given that Pridopidine works by binding and activating the sigma-1 receptor, do you perhaps know if this drug would also work for PALS with SIGMAR1 gene mutation?
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