Clinical Procedures to Support Research in ALS

Recruiting

• Conditions: Amyotrophic Lateral Sclerosis; ALS-Frontotemporal Dementia; Primary Lateral Sclerosis; Progressive Muscular Atrophy

• Registration Number: NCT03489278
• Lead Sponsor: University of Miami

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2018-3-23
• Last Update Posted: 2 September 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 1200

Inclusion Criteria

Inclusion Criteria:<br><br> - Diagnosis of ALS or a related disorder (e.g. primary lateral sclerosis, progressive<br> muscular atrophy).<br><br> - Receiving care at a clinical center that uses Epic as its EHR.<br><br> - Able and willing to provide informed consent (or informed consent obtainable from a<br> designated proxy).<br><br>Exclusion Criteria:<br><br> - Inability to understand English and/or Spanish

Exclusion Criteria

Not provided

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Using the ALS Toolkit for collecting and using electronic health record data for research purposes