Clinical Procedures to Support Research in ALS
CAPTURE-ALS
2 other identifiers
observational
1,200
1 country
11
Brief Summary
The purpose of the Clinical Procedures To Support Research (CAPTURE) study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Feb 2018
Longer than P75 for all trials
11 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
February 15, 2018
CompletedFirst Submitted
Initial submission to the registry
March 23, 2018
CompletedFirst Posted
Study publicly available on registry
April 5, 2018
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 1, 2026
ExpectedStudy Completion
Last participant's last visit for all outcomes
June 1, 2027
March 23, 2026
March 1, 2026
8.3 years
March 23, 2018
March 18, 2026
Conditions
Outcome Measures
Primary Outcomes (1)
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
12 months
Study Arms (1)
Affected
Affected with ALS or a related disorder.
Eligibility Criteria
Affected patients receiving care at a clinical center that uses Epic as EHR.
You may qualify if:
- 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 may not qualify if:
- Inability to understand English and/or Spanish
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- National Institutes of Health (NIH)collaborator
- University of Miamilead
- Muscular Dystrophy Associationcollaborator
- National Institute of Neurological Disorders and Stroke (NINDS)collaborator
- National Center for Advancing Translational Sciences (NCATS)collaborator
Study Sites (11)
University of California, Irvine
Irvine, California, 92868, United States
Stanford University
Palo Alto, California, 94304, United States
California Pacific Medical Center
San Francisco, California, 94115, United States
University of Miami
Miami, Florida, 33136, United States
University of Kansas Medical Center
Kansas City, Kansas, 66205, United States
Hennepin County Medical Center
Minneapolis, Minnesota, 55404, United States
Columbia University
New York, New York, 10032, United States
Duke University
Durham, North Carolina, 27708, United States
Wake Forest University
Winston-Salem, North Carolina, 27157, United States
Providence Health & Services
Portland, Oregon, 97213, United States
University of Texas San Antonio Health Science Center
San Antonio, Texas, 78229, United States
Biospecimen
Optional: Provide blood for a DNA sample during a clinic visit. Participants can choose to allow collection of information from their medical record, but choose not to give a blood sample for testing.
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Michael Benatar, MBChB, MS, DPhil
University of Miami
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Chief, Neuromuscular Division
Study Record Dates
First Submitted
March 23, 2018
First Posted
April 5, 2018
Study Start
February 15, 2018
Primary Completion (Estimated)
June 1, 2026
Study Completion (Estimated)
June 1, 2027
Last Updated
March 23, 2026
Record last verified: 2026-03
Data Sharing
- IPD Sharing
- Will not share