Clinical Procedures to Support Research in ALS

University of Miami1,200 enrolled

Overview

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.

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 Type

OBSERVATIONAL

Enrollment

1,200

Conditions

Amyotrophic Lateral Sclerosis ALS-Frontotemporal Dementia Primary Lateral Sclerosis Progressive Muscular Atrophy

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Locations (11)

University of California, Irvine

Irvine, California, United States

RECRUITING

Stanford University

Palo Alto, California, United States

RECRUITING

Outcomes

Primary Outcomes

Using the ALS Toolkit for collecting and using electronic health record data for research purposes

Time frame: 12 months

Central Contacts

Michael Benatar, MBChB, MS, DPhil

CONTACT

1-844-837-1031 projectcreate@miami.edu

Jessica Hernandez

CONTACT

1-844-837-1031 projectcreate@miami.edu

Data from ClinicalTrials.gov

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