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NCT03489278Recruiting

Clinical Procedures to Support Research in ALS

University of Miami

Start Date

2/15/2018

Completion Date

6/1/2034

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.

Eligibility Criteria

Age Range: 18 years to No maximum

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

Interested in This Trial?

Contact the trial locations directly using the information below to learn more about enrollment.

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Conditions

Amyotrophic Lateral SclerosisALS-Frontotemporal DementiaPrimary Lateral SclerosisProgressive Muscular Atrophy

Locations

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