Actively Recruiting
ALS/MND Natural History Study Data Repository
Led by Massachusetts General Hospital · Updated on 2025-11-14
5000
Participants Needed
16
Research Sites
821 weeks
Total Duration
On this page
Sponsors
M
Massachusetts General Hospital
Lead Sponsor
H
Henry Ford Health System
Collaborating Sponsor
AI-Summary
What this Trial Is About
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
Official Title
ALS/MND Natural History Study Data Repository
Who Can Participate
Eligibility Criteria
You may qualify if you...
- A clinical diagnosis of suspected, possible, probable, or definite ALS according to El Escorial criteria
- Diagnosis of other motor neuron disorders including Spinal-Bulbar Muscular Atrophy (Kennedy's disease), Spinal Muscular Atrophy, Primary Lateral Sclerosis, Progressive Muscular Atrophy, or Progressive Bulbar Palsy
- Age between 18 and 90 years
You will not qualify if you...
- Disease does not meet criteria for any motor neuron disorder
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 16 locations
1
Loma Linda University Health
Loma Linda, California, United States, 92354
Actively Recruiting
2
Kaiser Permanente
Los Angeles, California, United States, 90027
Actively Recruiting
3
University of Florida
Gainesville, Florida, United States, 32610
Actively Recruiting
4
Northwestern University
Chicago, Illinois, United States, 60611
Actively Recruiting
5
Lahey Clinic
Burlington, Massachusetts, United States, 01805
Actively Recruiting
6
Henry Ford Health System
Detroit, Michigan, United States, 48202
Actively Recruiting
7
University of Minnesota
Minneapolis, Minnesota, United States, 55455
Actively Recruiting
8
Saint Louis University
St Louis, Missouri, United States, 63104
Actively Recruiting
9
Providence ALS Clinic
Portland, Oregon, United States, 97213
Actively Recruiting
10
Temple University Lewis Katz School of Medicine
Philadelphia, Pennsylvania, United States, 19140
Actively Recruiting
11
University of Pittsburgh
Pittsburgh, Pennsylvania, United States, 15360
Actively Recruiting
12
Virginia Commonwealth University
Richmond, Virginia, United States, 22908
Actively Recruiting
13
Hadassah Medical Organization
Jerusalem, Israel, 9112001
Actively Recruiting
14
Tel Aviv Medical Center
Tel Aviv, Israel, 64239
Actively Recruiting
15
Centro Clinico NEMO Milano
Milan, Italy, 20162
Actively Recruiting
16
Istituti Clinici Scientifici Maugeri SpA
Milan, Italy, 20138
Actively Recruiting
Research Team
N
Natalia Tarasenko
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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