Study Summary
The purpose of the CAPTURE-ALS study is to utilize information collected in the medical record to learn more about a disease called amyotrophic lateral sclerosis (ALS) and related disorders.
For Diseases
- Amyotrophic lateral sclerosis (ALS)
- ALS-Frontotemporal dementia (ALS-FTD)
- Primary lateral sclerosis (PLS)
- Progressive muscular atrophy (PMA)
Background
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.
About This Study
Those participating in the study will provide electronic consent for researchers to use clinically collected information in electronic health records for research purposes. There is also an optional one-time DNA (blood sample) collection.
Targeted Enrollment
To be eligible to participate, you must: have a diagnosis of ALS or a related disorder and be receiving care at a clinical center that uses Epic as its EHR.
You are not eligible to participate if: you cannot understand English and/or Spanish
How to Participate:
In order to participate in this study, please contact the study coordinator at one of the participating institutions by phone or by e-mail.