Actively Recruiting
Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
Led by University of Miami · Updated on 2026-03-23
1200
Participants Needed
11
Research Sites
52 weeks
Total Duration
On this page
Sponsors
U
University of Miami
Lead Sponsor
M
Muscular Dystrophy Association
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are studying amyotrophic lateral sclerosis (ALS) and related disorders to better understand the natural history of these diseases. This observational study collects and analyzes clinical information from patients receiving care at centers using a specific electronic health record system. The goal is to gather standardized data to support ALS research and improve knowledge about the disease progression and characteristics. Participants include patients diagnosed with ALS or related disorders such as primary lateral sclerosis and progressive muscular atrophy. The study uses data collected through the Epic electronic health record system at clinical centers in the CReATe consortium. There are no investigational treatments or interventions; instead, the study focuses on gathering information systematically over time. During the study, researchers will use the ALS Toolkit to collect and utilize electronic health record data for up to 12 months. Participants will provide consent to allow access to their medical records, and the study team will analyze this information to track disease progression and related outcomes. Participants are expected to be those receiving care at participating centers, and the study involves no additional treatment procedures or interventions beyond usual care.
CONDITIONS
Brief Title
Clinical Procedures to Support Research in ALS
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive muscular atrophy).
- Receiving care at a clinical center that uses Epic as its EHR.
- Able and willing to provide informed consent (or informed consent obtainable from a designated proxy).
You will not qualify if you...
- Inability to understand English and/or Spanish
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 12 months
Participants who receive routine care for ALS or related disorders are observed to systematically gather clinical data through their electronic health records over time.
Data collected during routine care visits
Trial Site Locations
Total: 11 locations
1
University of California, Irvine
Irvine, California, United States, 92868
Actively Recruiting
2
Stanford University
Palo Alto, California, United States, 94304
Actively Recruiting
3
California Pacific Medical Center
San Francisco, California, United States, 94115
Actively Recruiting
4
University of Miami
Miami, Florida, United States, 33136
Actively Recruiting
5
University of Kansas Medical Center
Kansas City, Kansas, United States, 66205
Actively Recruiting
6
Hennepin County Medical Center
Minneapolis, Minnesota, United States, 55404
Actively Recruiting
7
Columbia University
New York, New York, United States, 10032
Active, Not Recruiting
8
Duke University
Durham, North Carolina, United States, 27708
Actively Recruiting
9
Wake Forest University
Winston-Salem, North Carolina, United States, 27157
Actively Recruiting
10
Providence Health & Services
Portland, Oregon, United States, 97213
Actively Recruiting
11
University of Texas San Antonio Health Science Center
San Antonio, Texas, United States, 78229
Actively Recruiting
Research Team
M
Michael Benatar, MBChB, MS, DPhil
J
Jessica Hernandez
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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