Clinical Procedures to Support Research in ALS (CAPTURE-ALS)

University of Miami

Status: Enrolling

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

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT03489278

U54NS092091 (U.S. NIH Grant/Contract)

20170785

Details and patient eligibility

About

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.

Full 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.

Enrollment: 1,200 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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

Trial design

1,200 participants in 1 patient group

Affected

Description:

Affected with ALS or a related disorder.