Clinical Trials
The Importance of Clinical Trials in ALS
Clinical trials are essential to advancing care and accelerating progress in ALS. They are how new treatments are tested, refined, and brought closer to the people who need them most. Every trial builds on the knowledge gained before it, helping researchers better understand the disease and explore new possibilities for slowing progression, managing symptoms, and improving quality of life.
Participation in clinical trials also empowers individuals and families affected by ALS to play an active role in shaping the future of care. By contributing to research today, trial participants help pave the way for tomorrow’s breakthroughs, offering hope not only for themselves, but for the entire ALS community.
For information on clinical trials, contact Natalie Villegas at nvillegas@alsuoc.org.
NEALS
The Northeast ALS Consortium (NEALS) provides the most accurate and up-to-date resource for information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases.
You can locate both interventional trials, which examine if an experimental treatment is effective and safe under controlled environments, and observational trials, which examine people in more natural environments to collect information about their disease without giving an intervention.
Contact an ALS Trial Liaison
Please contact Northeast ALS Consortium at (855) 437-4823 or alstrials@neals.org for more information about clinical trials. They are available to answer all your questions, help navigate the NEALS clinical trial database, and can help you enroll in a trial.
Access for ALL in ALS
The Access for ALL in ALS (ALL ALS) Consortium is an NIH-funded nationwide initiative working to make ALS research more accessible to everyone impacted by the disease. ALL ALS brings together researchers, people living with ALS, families, government, industry, and nonprofit organizations to drive progress towards effective treatments and, ultimately, a future without ALS.
ALL ALS is currently enrolling participants into two large observational studies, ASSESS and PREVENT. Through these studies, the consortium is collecting clinical data, biological samples, and digital health measurements to advance ALS research and improve quality of life.
Who can participate in ALL ALS:
- People living with ALS
- Individuals at genetic risk for ALS
- Volunteers without ALS
Key Points about ALL ALS:
- People living with ALS can participate completely remotely.
- There are more than 30 clinical ALL ALS sites across the U.S. and Puerto Rico.
- ALL ALS is collaborating with other research studies, including Target ALS, the ALS Natural History Study, the CDC National ALS Registry, and ALL FTD.
- ALL ALS is designed specifically to allow people to participate in both ALL ALS and experimental drug trials at the same time.
- Collected data and samples will be made available to approved-researchers for innovative ALS research, while ensuring participant confidentiality is maintained through strict data-sharing agreements.
How to get Involved:
To learn more about ALL ALS and to participate, visit all-als.org to submit an interest form, contact the Patient Navigation team at info@all-als.org, or follow ALL ALS on Instagram at @all_als_
For more information, view the video below.
