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

ArmDescriptionAssigned Intervention
Affected Affected with ALS or a related disorder.

Recruiting Locations

University of Kansas Medical Center
Kansas City, Kansas 66205
Contact:
Osvaldo Plascencia
913-945-9922
oplascencia@kumc.edu

More Details

Status
Recruiting
Sponsor
University of Miami

Study Contact

Michael Benatar, MBChB, MS, DPhil
1-844-837-1031
projectcreate@miami.edu

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.