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Clinical Procedures to Support Research in ALS
NCT03489278 · University of Miami
In plain English
Click the button to translate this study into plain language — what it is, who qualifies, and what participation looks like.
Official title
Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
About this study
The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases.
Eligibility criteria
Inclusion Criteria:
* 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).
Exclusion Criteria:
* Inability to understand English and/or Spanish
Study design
Enrollment target: 1200 participants
Age groups: adult, older_adult
Timeline
Starts: 2018-02-15
Estimated completion: 2027-06
Last updated: 2026-03-23
Primary outcomes
- • Using the ALS Toolkit for collecting and using electronic health record data for research purposes (12 months)
Sponsor
University of Miami · other
With: Muscular Dystrophy Association, National Institute of Neurological Disorders and Stroke (NINDS), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH)
Contacts & investigators
ContactMichael Benatar, MBChB, MS, DPhil · contact · projectcreate@miami.edu · 1-844-837-1031
ContactJessica Hernandez · contact · projectcreate@miami.edu · 1-844-837-1031
InvestigatorMichael Benatar, MBChB, MS, DPhil · principal_investigator, University of Miami
All locations (11)
University of California, IrvineRecruiting
Irvine, California, United States
Stanford UniversityRecruiting
Palo Alto, California, United States
California Pacific Medical CenterRecruiting
San Francisco, California, United States
University of MiamiRecruiting
Miami, Florida, United States
University of Kansas Medical CenterRecruiting
Kansas City, Kansas, United States
Hennepin County Medical CenterRecruiting
Minneapolis, Minnesota, United States
Columbia UniversityActive Not Recruiting
New York, New York, United States
Duke UniversityRecruiting
Durham, North Carolina, United States
Wake Forest UniversityRecruiting
Winston-Salem, North Carolina, United States
Providence Health & ServicesRecruiting
Portland, Oregon, United States
University of Texas San Antonio Health Science CenterRecruiting
San Antonio, Texas, United States