Long-term data collection on people living with ALS and other motor neurone diseases
Collects clinic data over time from adults with ALS or other motor neurone diseases.
Plain-language title generated from the registry record
Registry title: ALS/MND Natural History Study Data Repository
Key facts
- Where
- Burlington, Chicago, Detroit, Gainesville, Grand Rapids, Loma Linda, Los Angeles, Minneapolis, Philadelphia, Pittsburgh, Portland, Richmond, and St Louis, United StatesSee the 14 sites
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 18 and 90 years old?
Source: NCT05966038, who can take part
Where in United States
- Lahey ClinicBurlington, United StatesTaking people
- Northwestern UniversityChicago, United StatesTaking people
- Henry Ford Health SystemDetroit, United StatesTaking people
- University of FloridaGainesville, United StatesTaking people
- Trinity Health MichiganGrand Rapids, United StatesTaking people
- Loma Linda University HealthLoma Linda, United StatesTaking people
- Kaiser PermanenteLos Angeles, United StatesTaking people
- University of MinnesotaMinneapolis, United StatesTaking people
- Temple University Lewis Katz School of MedicinePhiladelphia, United StatesTaking people
- Thomas Jefferson UniversityPhiladelphia, United StatesTaking people
- University of PittsburghPittsburgh, United StatesTaking people
- Providence ALS ClinicPortland, United StatesTaking people
- Virginia Commonwealth UniversityRichmond, United StatesTaking people
- Saint Louis UniversitySt Louis, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Massachusetts General Hospital
- Trial code
- NCT05966038
- Record updated
- 20 May 2026
- Original description
This is a data repository for multi-site multi-protocol clinic-based Natural History Study of ALS and Other Motor Neuron Disorders (MND).Read full original descriptionShow less
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 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.
Inclusion: 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).
Exclusion: Disease does not meet criteria for any motor neuron disorder.