Recruiting

Observational Study

Sponsor:

University of Miami

Code:

NCT03489278

Conditions

Amyotrophic Lateral Sclerosis

ALS-Frontotemporal Dementia

Primary Lateral Sclerosis

Progressive Muscular Atrophy

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Study Details

Brief 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.

Conditions

Amyotrophic Lateral Sclerosis

ALS-Frontotemporal Dementia

Primary Lateral Sclerosis

Progressive Muscular Atrophy

Study ID

NCT03489278

Start date

Feb 15, 2018

Status verified date

Jun, 2026

Completion date

Jun, 2034

Anticipated

Primary completion date

Jun, 2032

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

1200 participants

Anticipated

Interventions and Outcome Measures

Arms

Affected

Affected with ALS or a related disorder.

Primary outcome measure

  • Using the ALS Toolkit for collecting and using electronic health record data for research purposes [ Time Frame: 12 months ]

Central Contacts and Locations

Central contacts

Michael Benatar, MBChB, MS, DPhil

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

Jessica Hernandez

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

Locations

University of California, Irvine

Recruiting

Irvine, California, United States, 92868

Contacts

Pola Gaid

657-233-1122polagaid@hs.uci.edu

Principal Investigator:

Namita Goyal, MD

Stanford University

Recruiting

Palo Alto, California, United States, 94304

Contacts

Rabia Farooquee

650-709-8735rfarooquee@stanford.edu

Principal Investigator:

Mawell Greene, MD

California Pacific Medical Center

Recruiting

San Francisco, California, United States, 94115

Contacts

Chow Saephanh

415-600-3935SaephaC@cpmcri.org

Principal Investigator:

Jonathan Katz, MD

University of Miami

Recruiting

Miami, Florida, United States, 33136

Contacts

Jessica Hernandez

305-243-2345jph93@miami.edu

Principal Investigator:

Michael Benatar, MBChB, MS, DPhil

University of Kansas Medical Center

Recruiting

Kansas City, Kansas, United States, 66205

Contacts

Osvaldo Plascencia

913-945-9922oplascencia@kumc.edu

Principal Investigator:

Jeffrey Statland, MD

Hennepin County Medical Center

Recruiting

Minneapolis, Minnesota, United States, 55404

Contacts

Daphne Fruchtman

612-873-2607DFruchtman@hhrinstitute.org

Principal Investigator:

Samuel Maiser, MD

Duke University

Recruiting

Durham, North Carolina, United States, 27708

Contacts

Hailey Zampa

hailey.zampa@duke.edu

Principal Investigator:

Xiaoyan Li

Wake Forest University

Recruiting

Winston-Salem, North Carolina, United States, 27157

Contacts

Lauren Richmond

336-716-9632lauren.richmond@advocatehealth.org

Principal Investigator:

James Caress, MD

Providence Health & Services

Recruiting

Portland, Oregon, United States, 97213

Contacts

Angela Phan

angelina.phan@providence.org

Principal Investigator:

Nicholas Olney, MD

University of Texas San Antonio Health Science Center

Recruiting

San Antonio, Texas, United States, 78229

Contacts

Randee Kent-Baron

kentbaron@uthscsa.edu

Principal Investigator:

Carlayne Jackson, MD

More Information

Sponsor

University of Miami

Last update posted

Jun 15, 2026

Last verified

Jun, 2026

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by University of Miami on 2026-06-15.