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Study identifier: NCT05966038 Synced from ClinicalTrials.gov · July 29, 2026
● Recruiting

ALS/MND Natural History Study Data Repository

Condition: ALS · PLS · MND (Motor Neurone DIsease)  ·  Sponsor: Massachusetts General Hospital

PhaseN/A
Planned participants5000
Who can joinAll sexes, 18 Years to 90 Years
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Natalia Tarasenko  ·  1617240346  ·  ntarasenko@mgh.harvard.edu

Always discuss trial participation with your own doctor first.

Locations (18)

Loma Linda University HealthLoma Linda, California, United StatesRecruiting
Kaiser PermanenteLos Angeles, California, United StatesRecruiting
University of FloridaGainesville, Florida, United StatesRecruiting
Northwestern UniversityChicago, Illinois, United StatesRecruiting
Lahey ClinicBurlington, Massachusetts, United StatesRecruiting
Henry Ford Health SystemDetroit, Michigan, United StatesRecruiting
Trinity Health MichiganGrand Rapids, Michigan, United StatesRecruiting
University of MinnesotaMinneapolis, Minnesota, United StatesRecruiting
Saint Louis UniversitySt Louis, Missouri, United StatesRecruiting
Providence ALS ClinicPortland, Oregon, United StatesRecruiting
Thomas Jefferson UniversityPhiladelphia, Pennsylvania, United StatesRecruiting
Temple University Lewis Katz School of MedicinePhiladelphia, Pennsylvania, United StatesRecruiting

+ 6 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT05966038