ALS/MND Natural History Study Data Repository (NCT05966038)
🩺 Plain-English Summary (8th-Grade Level)
This is a data repository for multi-site multi-protocol clinic-based Natural History Study of ALS and Other Motor Neuron Disorders (MND). All people living with ALS or other MNDs who attend clinics at the Study hospitals (sites) are offered to participate in the Study. The Sites collect so-called Baseline information including demographics, disease history and diagnosis, family history, etc. At each visit, the Sites also collect multiple disease-specific outcome measures and events. The information is captured in NeuroBANK, a patient-centric clinical research platform. The Sites have an option to choose to collect data into 20+ additional forms capturing biomarkers and outcome measures. Captured data after its curation are anonymized (all personal identifiers and dates are being removed), and the anonymized dataset is shared with medical researchers via a non-exclusive revocable license. Funding Source - Biogen, Inc.; Mitsubishi Tanabe Pharma America; FDA OOPD.
Who can join: Review the eligibility criteria below.
Location: Loma Linda University Health — Loma Linda, California
Age range: 18 Years to 90 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 (18 Sites)
- Loma Linda University Health — Loma Linda, California
- Kaiser Permanente — Los Angeles, California
- University of Florida — Gainesville, Florida
- Northwestern University — Chicago, Illinois
- Lahey Clinic — Burlington, Massachusetts
- Henry Ford Health System — Detroit, Michigan
- Trinity Health Michigan — Grand Rapids, Michigan
- University of Minnesota — Minneapolis, Minnesota
- Saint Louis University — St Louis, Missouri
- Providence ALS Clinic — Portland, Oregon
- Thomas Jefferson University — Philadelphia, Pennsylvania
- Temple University Lewis Katz School of Medicine — Philadelphia, Pennsylvania
- University of Pittsburgh — Pittsburgh, Pennsylvania
- Virginia Commonwealth University — Richmond, Virginia
- Hadassah Medical Organization — Jerusalem,
- Tel Aviv Medical Center — Tel Aviv,
- Centro Clinico NEMO Milano — Milan,
- Istituti Clinici Scientifici Maugeri SpA — Milan,
📞 Contact the Study Coordinator
Phone: (161) 724-0346
Email: ntarasenko@mgh.harvard.edu
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 ALS
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- Adenosine 2A Receptor Antagonism and AIH in ALS — Gainesville, Florida
- NYSCF Scientific Discovery Biobank — New York, New York
- Combined Respiratory Training in Persons With ALS — Fort Lauderdale, Florida
- ECoG BMI for Motor and Speech Control — San Francisco, California
Explore by condition: All ALS 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.