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:12/03/2020
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
Hennepin County Medical Center
Minneapolis, Minnesota 55404
University of Texas San Antonio Health Science Center
San Antonio, Texas 78229