Actively Recruiting
Study of Clinical Procedures Using Electronic Health Records to Understand ALS and Related Disorders
Led by University of Miami · Updated on 2026-06-15
1200
Participants Needed
11
Research Sites
104 weeks
Total Duration
AI-Summary
What this Trial Is About
Researchers are collecting and using medical record information to better understand amyotrophic lateral sclerosis ALS and related disorders such as ALS-frontotemporal dementia, primary lateral sclerosis, and progressive muscular atrophy. This observational study aims to gather standardized clinical data through electronic health records EHR from patients receiving care at specialized clinical centers using the Epic system. Participants diagnosed with ALS or related disorders who are receiving care at clinical centers part of the CReATe consortium will be enrolled. The study systematically collects clinical information via the EHR using a consistent method to characterize the natural progression of these diseases over time. Participants provide informed consent to allow access to their medical records for research purposes. Researchers will use tools like the ALS Toolkit to collect and analyze EHR data at regular intervals, focusing on understanding disease characteristics and progression. The study is expected to continue through June 2034, with ongoing data collection and monitoring throughout this period.
CONDITIONS
Brief Title
Clinical Procedures to Support Research in ALS
Research Team
M
Michael Benatar, MBChB, MS, DPhil
J
Jessica Hernandez
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