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

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT03489278
Recruitment Status : Recruiting
First Posted : April 5, 2018
Last Update Posted : October 20, 2021
Muscular Dystrophy Association
National Institute of Neurological Disorders and Stroke (NINDS)
National Center for Advancing Translational Science (NCATS)
National Institutes of Health (NIH)
Information provided by (Responsible Party):
Michael Benatar, University of Miami

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.

Condition or disease
Amyotrophic Lateral Sclerosis ALS-Frontotemporal Dementia Primary Lateral Sclerosis Progressive Muscular Atrophy

Detailed Description:
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.

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Study Type : Observational
Estimated Enrollment : 1200 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
Actual Study Start Date : February 15, 2018
Estimated Primary Completion Date : June 2024
Estimated Study Completion Date : June 2024

Affected with ALS or a related disorder.

Primary Outcome Measures :
  1. Using the ALS Toolkit for collecting and using electronic health record data for research purposes [ Time Frame: 12 months ]

Biospecimen Retention:   Samples With DNA
Optional: Provide blood for a DNA sample during a clinic visit. Participants can choose to allow collection of information from their medical record, but choose not to give a blood sample for testing.

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Affected patients receiving care at a clinical center that uses Epic as EHR.

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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT03489278

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Contact: Michael Benatar, MBChB, MS, DPhil 1-844-837-1031
Contact: Anne-Laure Grignon 1-844-837-1031

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United States, California
Stanford University Recruiting
Palo Alto, California, United States, 94304
Contact: Rabia Farooquee    650-709-8735   
Principal Investigator: Yuen T So, MD         
California Pacific Medical Center Recruiting
San Francisco, California, United States, 94115
Contact: Jennifer Milan    415-600-5764   
Principal Investigator: Jonathan Katz, MD         
United States, Colorado
University of Colorado Anschutz Medical Campus Recruiting
Aurora, Colorado, United States, 80045
Contact: Emily Hyslop    303-724-2190   
Principal Investigator: Laura Foster, MD         
United States, Florida
University of Miami Recruiting
Miami, Florida, United States, 33136
Contact: Jessica Hernandez    305-243-2345   
Principal Investigator: Michael Benatar, MBChB, MS, DPhil         
United States, Kansas
University of Kansas Medical Center Recruiting
Kansas City, Kansas, United States, 66205
Contact: Collin Gerringer    913-574-0008      
Principal Investigator: Jeffrey Statland, MD         
United States, Minnesota
Hennepin County Medical Center Recruiting
Minneapolis, Minnesota, United States, 55404
Contact: Cherie Martinson    612-873-2607   
Principal Investigator: Samuel Maiser, MD         
United States, New York
Columbia University Recruiting
New York, New York, United States, 10032
Contact: Sunil Jose    212-305-4746      
Principal Investigator: Matthew Harms, MD         
United States, North Carolina
Wake Forest University Recruiting
Winston-Salem, North Carolina, United States, 27157
Contact: Bridget Thomas    336-716-1367   
Principal Investigator: James Caress, MD         
United States, Oregon
Providence Health & Services Recruiting
Portland, Oregon, United States, 97213
Contact: Ashley Adamo    503-962-1171   
Principal Investigator: Nicholas Olney, MD         
United States, Texas
University of Texas San Antonio Health Science Center Recruiting
San Antonio, Texas, United States, 78229
Contact: Pamela Kittrell    210-450-0524   
Principal Investigator: Carlayne Jackson, MD         
Sponsors and Collaborators
University of Miami
Muscular Dystrophy Association
National Institute of Neurological Disorders and Stroke (NINDS)
National Center for Advancing Translational Science (NCATS)
National Institutes of Health (NIH)
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Principal Investigator: Michael Benatar, MBChB, MS, DPhil University of Miami
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Responsible Party: Michael Benatar, Chief, Neuromuscular Division, University of Miami Identifier: NCT03489278    
Other Study ID Numbers: 20170785
U54NS092091 ( U.S. NIH Grant/Contract )
First Posted: April 5, 2018    Key Record Dates
Last Update Posted: October 20, 2021
Last Verified: October 2021
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Additional relevant MeSH terms:
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Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Muscular Atrophy
Frontotemporal Dementia
Aphasia, Primary Progressive
Pick Disease of the Brain
Muscular Atrophy, Spinal
Pathologic Processes
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Neurocognitive Disorders
Mental Disorders
Pathological Conditions, Anatomical
Neurodegenerative Diseases
Neuromuscular Diseases
Spinal Cord Diseases
TDP-43 Proteinopathies
Proteostasis Deficiencies
Metabolic Diseases
Neuromuscular Manifestations
Neurologic Manifestations
Frontotemporal Lobar Degeneration
Speech Disorders
Language Disorders
Communication Disorders