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The best resources for finding an ALS drug trial and ALS research opportunities – – ALS Awareness Month 2024
“ALS Tips & News You Can Use”
We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS information, resources, and tips. Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.
The best resources for finding an ALS drug trial and ALS research opportunities
Many pALS and their families choose to get involved with research either in hopes of slowing down the progression and/or helping find a cure. There are research opportunities for people with sporadic or genetic ALS. You don’t necessarily have to have ALS to participate! Some studies are in need of people with a predisposition such as a genetic mutation associated with ALS and others need controls to participate. Some reputable sites to help you look for opportunities are below.
https://clinicaltrials.gov/ is a central database of clinical trials for all conditions, including ALS.
The ALS Association also lists opportunities at
https://www.als.org/research/clinical-trials-for-patients
Specific reputable ALS research organizations include:
https://lesturnerals.org/research-patient-center/clinical-trials-studies/
https://neals.org/als-trials/als-clinical-research
https://www.hopkinsmedicine.org/neurology-neurosurgery/clinical-trials/als-clinical-trials
https://www.miami-als.org/research/
https://www.mayo.edu/research/clinical-trials/diseases-conditions/amyotrophic-lateral-sclerosis-(als)
What else can you add to our list?
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2 Replies
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This is a great and comprehensive list! I recommend our members bookmark this post so that they can come back and refer to it all year long.
Big thanks Amanda, for compiling this list!
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https://www.massgeneral.org/neurology/als/research/platform-trial Massachusetts General Hospital Healey ALS Platform Trial
massgeneral.org
Borrowing from successes in cancer drug development, the Healey Center and NEALS faculty are leading the first ALS Platform Trial.
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