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

Study Purpose:

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.

Study Status:



Amyotrophic Lateral Sclerosis (ALS) , Familial ALS , Sporadic ALS , Primary Lateral Sclerosis (PLS)

Study Type:


Type of Intervention:


Intervention Name:






Study Chair(s)/Principal Investigator(s):

Michael Benatar, University of Miami ID:


Neals Affiliated?


Coordinating Center Contact Information

University of Miami

Michael Benatar, MBChB, MS, DPhil / email hidden; JavaScript is required / 844-837-1031

Miami, Florida, 33136 United States

Full Study Summary:

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 Sponsor:

University of Miami

Estimated Enrollment:


Estimated Study Start Date:

02 / 15 / 2018

Estimated Study Completion Date:

06 / 30 / 2024

Posting Last Modified Date:

11 / 01 / 2021

Date Study Added to

04 / 10 / 2018

Minimum Age:


Can participants use Riluzole?


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

Stanford University

Rabia Farooquee / 650-709-8735 / email hidden; JavaScript is required

Palo Alto, California 94304
United States

California Pacific Medical Center

Jennifer Milan / 415-600-5764 / email hidden; JavaScript is required

San Francisco, California 94115
United States

University of Colorado Anschutz Medical Campus

Emily Hyslop / 303-724-2190 / email hidden; JavaScript is required

Aurora, Colorado 80045
United States

University of Miami

Jessica Hernandez / 305-243-2345 / email hidden; JavaScript is required

Miami, Florida 33136
United States

University of Kansas Medical Center

Collin Gerringer / 913-574-0008

Kansas City, Kansas 66205
United States

Hennepin County Medical Center

Cherie Martinson / 612-873-2607 / email hidden; JavaScript is required

Minneapolis, Minnesota 55404
United States

Columbia University

Sunil Jose / 212-305-4746

New York, New York 10032
United States

Wake Forest University

Bridget Thomas / 336-716-1367 / email hidden; JavaScript is required

Winston-Salem, North Carolina 27157
United States

Providence Health & Services

Ashley Adamo / 503-962-1171 / email hidden; JavaScript is required

Portland, Oregon 97213
United States

University of Texas San Antonio Health Science Center

Pamela Kittrell / 210-450-0524 / email hidden; JavaScript is required

San Antonio, Texas 78229
United States