This study, called CAPTURE, is looking at information already collected in your medical records to better understand amyotrophic lateral sclerosis (ALS) and related conditions like primary lateral sclerosis and progressive muscular atrophy. Researchers are not testing any new treatments or interventions. Instead, they are using a standardized approach to gather health information from electronic health records (EHRs) to learn about how these diseases progress over time. You may be able to join if you have ALS or a related disorder, are 18 or older, receive care at a clinic that uses Epic for its EHR, and can provide informed consent. The study aims to see how well a specific toolkit works for collecting and using this health record data for research over 12 months. The current status of this study is unclear.

Study design

This is an observational study, meaning no interventions are being tested. It plans to include up to 1200 participants.

What's involved

Not specified in the trial record.

Compensation

Not stated in the trial record.

Follow-up

The primary endpoint is measured at 12 months, which suggests a follow-up period of at least that long.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.