Research to gather clinical data on ALS and related disorders
Clinical Procedures to Support Research in ALS (CAPTURE-ALS)
This study is collecting health information from people with ALS and similar disorders to better understand these conditions and help improve future treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1200 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University of Miami Academic / other |
| Locations | 11 sites (Irvine, California and 10 other locations) |
| Trial ID | NCT03489278 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with ALS or related disorders who are receiving care at a participating clinical center using the Epic EHR system.
Not a fit: Patients who do not speak English or Spanish may not benefit from this study due to the informed consent requirements.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into ALS and related disorders, potentially leading to improved patient care and treatment options.
How similar studies have performed: Other studies utilizing electronic health records for similar purposes have shown promise in advancing understanding of neurological conditions, indicating that this approach is both relevant and potentially impactful.
Eligibility criteria
Show full inclusion / exclusion criteria
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 this trial is running
Irvine, California and 10 other locations
- 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)
- Columbia University — New York, New York, United States (Active_not_recruiting)
- Duke University — Durham, North Carolina, United States (Recruiting)
- Wake Forest University — Winston-Salem, North Carolina, United States (Recruiting)
- Providence Health & Services — Portland, Oregon, United States (Recruiting)
- University of Texas San Antonio Health Science Center — San Antonio, Texas, 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.