ALS/MND Natural History Study Data Repository

Recruiting now

Conditions studied: ALS, PLS, MND (Motor Neurone DIsease), Kennedy Disease, PMA - Progressive Muscular Atrophy, PBP - Progressive Bulbar Palsy

In brief

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.

Key facts

Study ID

NCT05966038

Run by

Massachusetts General Hospital

People needed

5000

Starts

2015-04-01

Expected to finish

2030-12-31

Last updated by the study team

2026-05-20

Who can join

Age: 18 and older, up to 90. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS or
• Other motor neuron disorders, including but not limited to Spinal-Bulbar Muscular Atrophy (SBMA, Kennedy's disease), Spinal Muscular Atrophy (SMA), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), and Progressive Bulbar Palsy (PBP)

You may not qualify if…

• Disease does not meet criteria for any motor neuron disorder

Where it is running

• Loma Linda University Health — Loma Linda, California, United States (enrolling)
• Kaiser Permanente — Los Angeles, California, United States (enrolling)
• University of Florida — Gainesville, Florida, United States (enrolling)
• Northwestern University — Chicago, Illinois, United States (enrolling)
• Lahey Clinic — Burlington, Massachusetts, United States (enrolling)
• Henry Ford Health System — Detroit, Michigan, United States (enrolling)
• Trinity Health Michigan — Grand Rapids, Michigan, United States (enrolling)
• University of Minnesota — Minneapolis, Minnesota, United States (enrolling)
• Saint Louis University — St Louis, Missouri, United States (enrolling)
• Providence ALS Clinic — Portland, Oregon, United States (enrolling)
• Thomas Jefferson University — Philadelphia, Pennsylvania, United States (enrolling)
• Temple University Lewis Katz School of Medicine — Philadelphia, Pennsylvania, United States (enrolling)
• University of Pittsburgh — Pittsburgh, Pennsylvania, United States (enrolling)
• Virginia Commonwealth University — Richmond, Virginia, United States (enrolling)
• Hadassah Medical Organization — Jerusalem, Israel (enrolling)
• Tel Aviv Medical Center — Tel Aviv, Israel (enrolling)
• Centro Clinico NEMO Milano — Milan, Italy (enrolling)
• Istituti Clinici Scientifici Maugeri SpA — Milan, Italy (enrolling)

Full record on ClinicalTrials.gov

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