Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
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 Chair(s)/Principal Investigator(s):
Michael Benatar, University of Miami
Clinicaltrials.gov ID (11 digit #):NCT03489278
Coordinating Center Contact InformationUniversity of Miami
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 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
Time since Symptom Onset:N/A
Time since Diagnosis:N/A
Can participants use Riluzole?Yes
- 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).
- Inability to understand English and/or Spanish
Site Contact Information
Palo Alto, California 94304
California Pacific Medical Center
San Francisco, California 94115
University of Miami
Miami, Florida 33136
University of Kansas Medical Center
Collin Gerringer / 913-574-0008
Kansas City, Kansas 66205
Hennepin County Medical Center
Minneapolis, Minnesota 55404
Sunil Jose / 212-305-4746
New York, New York 10032
Wake Forest University
Winston-Salem, North Carolina 27157
University of Texas San Antonio Health Science Center
San Antonio, Texas 78229