Clinical Procedures to Support Research in ALS

NCT ID: NCT03489278

Last Updated: 2025-09-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

1200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-02-15

Study Completion Date

2027-06-30

Brief Summary

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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

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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.

Conditions

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

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Affected

Affected with ALS or a related disorder.

No interventions assigned to this group

Eligibility Criteria

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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
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Muscular Dystrophy Association

OTHER

Sponsor Role collaborator

National Institute of Neurological Disorders and Stroke (NINDS)

NIH

Sponsor Role collaborator

National Center for Advancing Translational Sciences (NCATS)

NIH

Sponsor Role collaborator

National Institutes of Health (NIH)

NIH

Sponsor Role collaborator

University of Miami

OTHER

Sponsor Role lead

Responsible Party

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Michael Benatar

Chief, Neuromuscular Division

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Michael Benatar, MBChB, MS, DPhil

Role: PRINCIPAL_INVESTIGATOR

University of Miami

Locations

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University of California, Irvine

Irvine, California, United States

Site Status RECRUITING

Stanford University

Palo Alto, California, United States

Site Status RECRUITING

California Pacific Medical Center

San Francisco, California, United States

Site Status RECRUITING

University of Miami

Miami, Florida, United States

Site Status RECRUITING

University of Kansas Medical Center

Kansas City, Kansas, United States

Site Status RECRUITING

Hennepin County Medical Center

Minneapolis, Minnesota, United States

Site Status RECRUITING

Columbia University

New York, New York, United States

Site Status RECRUITING

Duke University

Durham, North Carolina, United States

Site Status RECRUITING

Wake Forest University

Winston-Salem, North Carolina, United States

Site Status RECRUITING

Providence Health & Services

Portland, Oregon, United States

Site Status RECRUITING

University of Texas San Antonio Health Science Center

San Antonio, Texas, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Michael Benatar, MBChB, MS, DPhil

Role: CONTACT

1-844-837-1031

Jessica Hernandez

Role: CONTACT

1-844-837-1031

Facility Contacts

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Mercedes Herrera

Role: primary

714-509-2665

Rabia Farooquee

Role: primary

650-709-8735

Chow Saephanh

Role: primary

415-600-3935

Jessica Hernandez

Role: primary

305-243-2345

Osvaldo Plascencia

Role: primary

913-945-9922

Daphne Fruchtman

Role: primary

612-873-2607

Ben Hoover

Role: primary

646-574-7399

Hailey Zampa

Role: primary

Robert Ward

Role: primary

336-716-9056

Angela Phan

Role: primary

Randee Kent-Baron

Role: primary

Other Identifiers

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U54NS092091

Identifier Type: NIH

Identifier Source: secondary_id

View Link

20170785

Identifier Type: -

Identifier Source: org_study_id

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