Clinical Procedures to Support Research in ALS

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.

Recruiting

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Key information

Conditions

Amyotrophic Lateral Sclerosis ALS-Frontotemporal Dementia Central Nervous System Diseases Metabolic Diseases Motor Neuron Disease Muscular Atrophy, Spinal Nervous System Diseases Neurodegenerative Diseases Neuromuscular Diseases Nutritional and Metabolic Diseases Primary Lateral Sclerosis Progressive Muscular Atrophy Proteostasis Deficiencies Spinal Cord Diseases TDP-43 Proteinopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

University of California, Irvine, Irvine, California, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

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

Time frame: 12 months

Study contacts

Contact information is provided by the study sponsor or research team.

Jessica Hernandez

CONTACT

[email protected]

1-844-837-1031

Michael Benatar, MBChB, MS, DPhil

CONTACT

[email protected]

1-844-837-1031

Sponsors and collaborators

Lead sponsor

University of Miami

Other

Collaborators

Muscular Dystrophy Association
National Center for Advancing Translational Sciences (NCATS)
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)

Registry information

Official study title

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

Acronym: CAPTURE-ALS

Important dates

Study start: 2018
Primary completion: 2032
Study completion: 2034
First posted: Apr 5, 2018
Registry last updated: Jun 15, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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Active, Not Recruiting