Clinical Procedures to Support Research in ALS
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.
Conditions
- Amyotrophic Lateral Sclerosis
- ALS-Frontotemporal Dementia
- Primary Lateral Sclerosis
- Progressive Muscular Atrophy
Eligibility
- Eligible Ages
- Over 18 Years
- Eligible Genders
- All
- Accepts Healthy Volunteers
- No
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
Study Design
- Phase
- Study Type
- Observational
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Affected | Affected with ALS or a related disorder. |
Recruiting Locations
University of Kansas Medical Center
Kansas City, Kansas 66205
Kansas City, Kansas 66205
More Details
- Status
- Recruiting
- Sponsor
- University of Miami
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.