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ALS/MND Natural History Study Data Repository
NCT05966038 · View on ClinicalTrials.gov ↗
Study Summary
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.
Conditions Studied
Study Locations (16)
Other
- Hadassah Medical Organization — Jerusalem
- Tel Aviv Medical Center — Tel Aviv
- Centro Clinico NEMO Milano — Milan
- Istituti Clinici Scientifici Maugeri SpA — Milan
California
- Loma Linda University Health — Loma Linda
- Kaiser Permanente — Los Angeles
Pennsylvania
- Temple University Lewis Katz School of Medicine — Philadelphia
- University of Pittsburgh — Pittsburgh
Florida
- University of Florida — Gainesville
Illinois
- Northwestern University — Chicago
Massachusetts
- Lahey Clinic — Burlington
Michigan
- Henry Ford Health System — Detroit
Minnesota
- University of Minnesota — Minneapolis
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 5,000 participants |
| Start Date | 2015-04-01 |
| Est. Completion | 2030-12-31 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT05966038
The ClinicalTrials.gov registry entry for NCT05966038 describes a study currently listed as recruiting. It is categorized as an unspecified phase, which is the standard way researchers label where a study sits along the investigational pathway from early safety work through later efficacy and post-marketing evaluation. The registered enrollment target is 5,000 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is Massachusetts General Hospital, which has 1,948 total studies on file at ClinicalTrials.gov, and sponsors are the parties responsible for study design, oversight, and regulatory filings.
The record links to 6 conditions, with ALS appearing as the primary indexed condition, and to 0 interventions. Interventions can include drugs, devices, procedures, behavioral programs, or observational arms, and each is tracked as a separate registry field so that downstream queries can filter accurately. When a trial lists multiple interventions, it usually reflects a multi-arm design or a comparison protocol rather than a single treatment being tested in isolation. The brief summary published in the registry is the clearest source of protocol intent and should be read before drawing conclusions from any sidebar tags.
Geographic footprint matters for practical reasons: NCT05966038 reports 16 study locations spanning 11 distinct geographic areas — top geographies include Other, California, Pennsylvania. A larger site network tends to correlate with broader recruitment capacity, but it does not imply anything about study quality, and site-level enrollment status can diverge from the overall registry status shown above. Every data point on this page comes from the public ClinicalTrials.gov dataset and is reproduced here for reference only; it is not a medical recommendation, an endorsement of the sponsor, or an invitation to enroll. Verify current status, eligibility criteria, and contact details directly at ClinicalTrials.gov, and discuss any participation decision with your own healthcare provider.
Frequently Asked Questions
What is clinical trial NCT05966038 about?
NCT05966038 is a clinical study titled "ALS/MND Natural History Study Data Repository". 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 ...
What is the current status of trial NCT05966038?
This trial is currently recruiting. The enrollment target is 5,000 participants. The study started on 2015-04-01. Estimated completion is 2030-12-31.
What conditions does trial NCT05966038 study?
This clinical trial studies the following conditions: ALS, PLS, MND (Motor Neurone DIsease), Kennedy Disease, PMA - Progressive Muscular Atrophy. These conditions were identified from the trial registry and reflect the primary focus areas of the research.
Who is sponsoring clinical trial NCT05966038?
This trial is sponsored by Massachusetts General Hospital, which has 1,948 total clinical trials registered on ClinicalTrials.gov. The sponsor is responsible for the study's design, funding, and regulatory compliance.
Where is trial NCT05966038 being conducted?
This trial has 16 study locations across California, Florida, Illinois, Massachusetts, Michigan. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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