ALS-Frontotemporal Dementia, Amyotrophic Lateral Sclerosis, Primary Lateral Sclerosis, Progressive Muscular Atrophy
Conditions
Brief summary
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.
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.
Interventions
None listed
Sponsors
University of Miami
Muscular Dystrophy Association
National Institute of Neurological Disorders and Stroke (NINDS)
National Center for Advancing Translational Sciences (NCATS)
National Institutes of Health (NIH)
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
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
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Using the ALS Toolkit for collecting and using electronic health record data for research purposes | 12 months |
Countries
United States
Contacts
CONTACTMichael Benatar, MBChB, MS, DPhil
CONTACTJessica Hernandez
PRINCIPAL_INVESTIGATORMichael Benatar, MBChB, MS, DPhil
University of Miami
Outcome results
None listed