Clinical Procedures to Support Research in ALS

Recruiting

• Conditions: Amyotrophic Lateral Sclerosis; Primary Lateral Sclerosis; ALS-Frontotemporal Dementia; Progressive Muscular Atrophy

• Registration Number: NCT03489278
• Lead Sponsor: University of Miami

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.

Detailed Description

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.

Study Timeline

• Study Start: 2018-02-15
• Study First Submitted: 2018-03-23
• Study First Submitted QC: 2018-04-04
• Study First Posted: 2018-04-05
• Status Verified: 2024-12
• Last Update Submitted: 2024-12-16
• Last Update Posted: 2024-12-19
• Primary Completion: 2025-06
• Study Completion: 2025-06

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 1200

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

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Using the ALS Toolkit for collecting and using electronic health record data for research purposes	12 months

Trial Locations

Locations (11)

University of California, Irvine; 🇺🇸 Irvine, California, United States

Stanford University; 🇺🇸 Palo Alto, California, United States

California Pacific Medical Center; 🇺🇸 San Francisco, California, United States

University of Miami; 🇺🇸 Miami, Florida, United States

University of Kansas Medical Center; 🇺🇸 Kansas City, Kansas, United States

Hennepin County Medical Center; 🇺🇸 Minneapolis, Minnesota, United States

Columbia University; 🇺🇸 New York City, New York, United States

Duke University; 🇺🇸 Durham, North Carolina, United States

Wake Forest University; 🇺🇸 Winston-Salem, North Carolina, United States

Providence Health & Services; 🇺🇸 Portland, Oregon, United States

University of Texas San Antonio Health Science Center; 🇺🇸 San Antonio, Texas, United States