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:
Recruiting
Disease:
Amyotrophic Lateral Sclerosis (ALS) , Familial ALS , Sporadic ALS , Primary Lateral Sclerosis (PLS)
Study Type:
Observational
Type of Intervention:
N/A
Intervention Name:
N/A
Placebo:
N/A
Phase:
N/A
Study Chair(s)/Principal Investigator(s):
Michael Benatar, University of Miami
Clinicaltrials.gov ID:
Neals Affiliated?
No
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:
1200
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 neals.org:
04 / 10 / 2018
Minimum Age:
18
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
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