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.
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
Affected patients receiving care at a clinical center that uses Epic as EHR.
Cohort
Prospective
Not listed
Using the ALS Toolkit for collecting and using electronic health record data for research purposes
Click on the lead sponsor to view all of their trials.
University of Miami
Lead sponsor
Muscular Dystrophy Association
Collaborator
National Institute of Neurological Disorders and Stroke (NINDS)
Collaborator
National Center for Advancing Translational Sciences (NCATS)
Collaborator
National Institutes of Health (NIH)
Collaborator
