Research to gather clinical data on ALS and related disorders

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The CAPTURE study aims to collect and analyze clinical data from patients diagnosed with amyotrophic lateral sclerosis (ALS) and related disorders through their electronic health records (EHR). Patients receiving care at participating clinical centers that utilize the Epic EHR system will be consented to contribute their medical information. This systematic approach will help characterize the natural history of ALS and related diseases, enhancing understanding and potentially guiding future research and treatment strategies.

Why it matters

Who can join: the full rules

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

Where it's running

• University of California, Irvine
  Irvine, California, United States Recruiting
• Stanford University
  Palo Alto, California, United States Recruiting
• California Pacific Medical Center
  San Francisco, California, United States Recruiting
• University of Miami
  Miami, Florida, United States Recruiting
• University of Kansas Medical Center
  Kansas City, Kansas, United States Recruiting
• Hennepin County Medical Center
  Minneapolis, Minnesota, United States Recruiting

Study contacts

• Principal investigator: Michael Benatar, MBChB, MS, DPhil — University of Miami
• Study coordinator: Michael Benatar, MBChB, MS, DPhil
• Email: projectcreate@miami.edu
• Phone: 1-844-837-1031

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Other studies for the same condition or treatment. Recruiting studies are listed first.

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.