Clinical Procedures to Support Research in ALS

a study on Amyotropic Lateral Sclerosis (ALS) Dementia Frontotemporal Dementia Lateral Sclerosis Progressive Muscular Atrophy Muscular Atrophy Primary Progressive Aphasia Spinal Muscular Atrophy

Summary

Eligibility
for people ages 18 years and up (full criteria)
Location
at UC Irvine
Dates
study started
completion around
Principal Investigator
by Namita Goyal, MD (uci)

Description

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.

Official Title

Clinical Procedures to Support Research in ALS (CAPTURE-ALS)

Details

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.

Keywords

Amyotrophic Lateral Sclerosis, ALS-Frontotemporal Dementia, Primary Lateral Sclerosis, Progressive Muscular Atrophy, Motor Neuron Disease, Muscular Atrophy, Frontotemporal Dementia, Primary Progressive Aphasia, Pick Disease of the Brain, Spinal Muscular Atrophy, Sclerosis, Affected

Eligibility

You can join if…

Open to people ages 18 years and up

  • 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).

You CAN'T join if...

- Inability to understand English and/or Spanish

Locations

  • University of California, Irvine accepting new patients
    Irvine California 92868 United States
  • California Pacific Medical Center accepting new patients
    San Francisco California 94115 United States
  • Stanford University accepting new patients
    Palo Alto California 94304 United States

Lead Scientist at University of California Health

  • Namita Goyal, MD (uci)
    Clinical Professor, Neurology, School of Medicine. Authored (or co-authored) 49 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
University of Miami
ID
NCT03489278
Study Type
Observational
Participants
Expecting 1200 study participants
Last Updated