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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.

Disease:

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

Study Type:

Observational Study

Study Category:

Study Status:

Enrolling

Phase:

Not Applicable

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

Michael Benatar, University of Miami

Clinicaltrials.gov ID (11 digit #):

NCT03489278

Neals Affiliated?

No

Coordinating Center Contact Information

University of Miami
Michael Benatar, MBChB, MS, DPhil / .(JavaScript must be enabled to view this email address) / 844-837-1031
Sumaira Hussain / .(JavaScript must be enabled to view this email address) 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

Participant Duration:

Estimated Enrollment:

1200

Estimated Study Start Date:

02/15/2018

Estimated Study Completion Date:

06/30/2024

Posting Last Modified Date:

04/12/2021

Date Study Added to alsconsortium.org:

04/10/2018
  • Eligibility Criteria

    Gender:

    Female, Male

    Minimum Age:

    18

    Maximum Age:

    N/A

    Time since Symptom Onset:

    N/A

    Time since Diagnosis:

    N/A

    Can participants use Riluzole?

    Yes


    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

  • Site Contact Information

    Stanford University
    Natalie Lillie / .(JavaScript must be enabled to view this email address) / 650-724-3792
    Palo Alto, California 94304
    United States

    California Pacific Medical Center
    Jennifer Milan / .(JavaScript must be enabled to view this email address) / 415-600-5764
    San Francisco, California 94115
    United States

    University of Miami
    Jessica Hernandez / .(JavaScript must be enabled to view this email address) / 305-243-2345
    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 / .(JavaScript must be enabled to view this email address) / 612-873-2607
    Minneapolis, Minnesota 55404
    United States

    Columbia University
    Sunil Jose / 212-305-4746
    New York, New York 10032
    United States

    Wake Forest University
    Summer Harris / .(JavaScript must be enabled to view this email address) / 336-716-3919
    Winston-Salem, North Carolina 27157
    United States

    University of Texas San Antonio Health Science Center
    Pamela Kittrell / .(JavaScript must be enabled to view this email address) / 210-450-0524
    San Antonio, Texas 78229
    United States