PREVENT ALL ALS Study (NCT06581861)
PREVENT ALL ALS - Longitudinal Biomarker Study for Participants Who Are Genetically at Risk for Amyotrophic Lateral Sclerosis (ALS)
🩺 Plain-English Summary (8th-Grade Level)
The ALL ALS Clinical Research Consortium is establishing research to collect a wide range of samples, clinical information and measurements from Amyotrophic Lateral Sclerosis (ALS) symptomatic, ALS gene carriers and control cohorts. This consortium is begin funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS) and managed by two clinical coordinating centers (CCC) at Barrow Neurological Institute and Massachusetts General Hospital. The clinical sites are distributed across the country, and led by a group of collaborative principal investigators. Once data and samples are collected and harmonized, it will be made available to research community for future research into ALS and related neurological diseases. PREVENT protocol is specific for asymptomatic participants who are genetically at risk for ALS. The participants will be followed for up to 36 months (3 years), and will include 4 in-person on-site visits once a year and 6 off-site(remote) visits once in 4 months. The study includes collection of medical history, clinical outcomes, and blood samples once in 4 months. Additionally, the participants will complete patient reported outcomes and speech recordings once in 4 months. Participants may also provide optional Cerebrospinal Fluid (CSF) samples.The participants may also opt into a sub-study if they are interested in genetic testing for ALS causative genes. The sub-study will involve a minimum of 3 visits over a course of 2-3 months. This will include a screening/pre-test genetic counseling visit, a return of genetic results and a post-test counseling visit.
Who can join: Review the eligibility criteria below.
Location: University of Alabama Birmingham — Birmingham, Alabama
Age range: 18 Years
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (32 Sites)
Showing the first 25 of 32 sites.
- University of Alabama Birmingham — Birmingham, Alabama
- Barrow Neurological Institute — Phoenix, Arizona
- University of California San Diego — La Jolla, California
- University of California Irvine — Orange, California
- University of California, San Francisco — San Francisco, California
- University of Colorado Anschutz Medical Campus — Aurora, Colorado
- Hospital for Special Care — New Britain, Connecticut
- Georgetown University — Washington D.C., District of Columbia
- Mayo Clinic — Jacksonville, Florida
- Saint Alphonsus Regional Medical Center — Boise, Idaho
- Northwestern University — Chicago, Illinois
- Indiana University — Indianapolis, Indiana
- John Hopkins University — Baltimore, Maryland
- Nih/Ninds — Bethesda, Maryland
- Massachusetts General Brigham — Boston, Massachusetts
- University of Michigan — Ann Arbor, Michigan
- Henry Ford Health — Detroit, Michigan
- University of Minnesota — Minneapolis, Minnesota
- Washington University — St Louis, Missouri
- University of Nebraska Medical Center — Omaha, Nebraska
- Dartmouth Hitchcock Medical Center — Lebanon, New Hampshire
- Columbia University — New York, New York
- Duke University — Durham, North Carolina
- Ohio State University — Columbus, Ohio
- Providence ALS Center — Portland, Oregon
📞 Contact the Study Coordinator
Phone: (602) 845-0248
Email: info@all-als.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Amyotrophic Lateral Sclerosis
- Intravenous Immunoglobulin (IVIG) and Blood-Brain Barrier Disruption in Amyotrophic Lateral Sclerosis (ALS) — Toronto, Ontario
- Regulatory T Cells for Amyotrophic Lateral Sclerosis — New York, New York
- Rho Kinase Inhibitor in Amyotrophic Lateral Sclerosis (REAL) — Phoenix, Arizona
- TRIAL READY (Clinical Trial Readiness) — Miami, Florida
- Phase III Trial of AMX0035 for Amyotrophic Lateral Sclerosis Treatment — Phoenix, Arizona
- Personalized Antisense Oligonucleotide for a Single Participant With CHCHD10 ALS — New York, New York
Explore by condition: All Amyotrophic Lateral Sclerosis clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.