Actively Recruiting
Clinical Procedures to Support Research in ALS (CAPTURE-ALS) to Collect and Analyze Medical Record Data for ALS and Related Disorders
Led by University of Miami · Updated on 2026-03-23
1200
Participants Needed
11
Research Sites
484 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 these diseases by using information collected from patients' medical records. The study focuses on individuals receiving care at clinical centers within the CReATe consortium that use the Epic electronic health record (EHR) system. This research aims to develop a detailed clinical dataset that captures the natural progression of ALS and similar conditions. Participants diagnosed with ALS or related disorders, such as primary lateral sclerosis or progressive muscular atrophy, will be included if they are receiving care at eligible clinical centers. The study involves collecting standardized clinical data through the Epic EHR system to support research efforts. There are no additional treatments or interventions administered as part of this study. Throughout the 12-month study period, researchers will use the ALS Toolkit to collect and analyze electronic health record data. The study will monitor participants by reviewing their medical records to gather relevant clinical information. Data collected will help characterize disease progression and support further ALS research, with ongoing assessments relying on the information available in participants' health records.
CONDITIONS
Official 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 electronic health record system.
- 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
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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