A network to improve care for people with epilepsy
Official title: Epilepsy Learning Healthcare System (ELHS) for Quality Care & Outcome Improvement
Run by Epilepsy Foundation of America · NCT06265103 · Data updated 2026-11-12
This study is trying to see if a new network can improve care and health outcomes for people with epilepsy by bringing together doctors, patients, and researchers to share and use health data.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 100000 (estimated) |
| Sponsor | Epilepsy Foundation of America Academic / other |
| Locations | 13 sites (Phoenix, Arizona and 12 other locations) |
| Status | Recruiting |
| Started | March 20, 2019 |
| Main results expected | February 14, 2099 |
| Study ends | February 14, 2099 |
| Registry record updated | August 30, 2024 |
| Trial ID | NCT06265103 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this study are individuals who are currently in an established care relationship with an ELHS site and have a diagnosis of epilepsy.
✕Probably not a fit
Patients who are not in an established care relationship with the ELHS site or do not have a diagnosis of epilepsy may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The Epilepsy Learning Health System (ELHS) is a collaborative network aimed at enhancing outcomes for individuals with epilepsy through a model of value-based chronic care. It involves clinicians, patients, and researchers working together to collect and analyze clinical data, which is then used for personalized care, population management, and quality improvement. The network employs quality improvement methods, such as Plan-Do-Study-Act cycles, to continuously refine and enhance epilepsy care. The ELHS Registry gathers data from both children and adults with epilepsy during standard care to track health outcomes over time.
Why it matters
Potential benefit: If successful, this initiative could lead to improved seizure control and quality of life for individuals living with epilepsy.
How similar studies have gone: Other studies have shown success with similar collaborative approaches in improving healthcare outcomes, making this initiative a promising model.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * In order to be eligible to participate in this registry-based study, an individual must meet all of the following criteria: * Patient is in an established care relationship with the ELHS site Exclusion Criteria: * An individual who meets any of the following criteria will be excluded from participation in this registry-based research study: * Patients who are not currently in nor expect to be in an established care relationship with the ELHS site (for example, patients who are being seen at the center for a second opinion only). * Patients who do not, after diagnostic evaluation, meet criteria for a diagnosis of epilepsy will not be analyzed in epilepsy-specific population groups. However, these non-epilepsy patients will not be excluded from the registry.
Where it's running
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Barrow Neurological Institute Comprehensive Epilepsy Center
Phoenix, Arizona, United States Recruiting -
University of Southern California
Los Angeles, California, United States Recruiting -
UC Health University of Colorado Anshutz
Aurora, Colorado, United States Recruiting -
Epilepsy Foundation
Bowie, Maryland, United States Recruiting -
Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH)
Boston, Massachusetts, United States Recruiting -
Brigham & Women's Hospital
Boston, Massachusetts, United States Recruiting
Show 7 more locations
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University of Cincinnati Gardner Neuroscience Institute Epilepsy Center
Cincinnati, Ohio, United States Recruiting -
Penn State Hershey
Hershey, Pennsylvania, United States Recruiting -
Children's Hospital of Philadelphia (CHOP)
Philadelphia, Pennsylvania, United States Recruiting -
UT Southwestern Children's Dallas
Dallas, Texas, United States Recruiting -
Children's Hospital Los Angeles
Los Angeles, California, United States Not yet recruiting -
Akron Children's Hospital
Akron, Ohio, United States Not yet recruiting -
Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC)
Cincinnati, Ohio, United States Not yet recruiting
Study contacts
- Principal investigator: Brandy Fureman, PhD — Epilepsy Foundation
- Study coordinator: Brandy E Fureman, PhD
- Email: bfureman@efa.org
- Phone: 2404767127
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Registry and natural history of epilepsy-dyskinesia syndromes
This registry will collect health data and biological samples from people of all ages who have a genetic diagnosis of epilepsy-dyskinesia syndromes to see how their genes relate to their movement and seizure symptoms over time.
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Understanding epilepsy-dyskinesia syndromes in children
This study is trying to learn more about epilepsy-dyskinesia syndromes in children by gathering information from different countries to see how these movement and seizure disorders are related.
-
Low-intensity focused ultrasound treatment for drug-resistant epilepsy
This study is testing if low-intensity focused ultrasound can help people with drug-resistant temporal lobe epilepsy have fewer seizures while they continue taking their regular medications.
-
Long-term observation of ultra-rare inherited neurological diseases.
This study is looking to learn more about very rare inherited neurological diseases by tracking and collecting information from patients over a long time to see how these conditions change and affect their lives.
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RAP-219 long-acting injectable safety and PK study in healthy adults
This early study tests RAP-219-LAI in healthy adults to see how it behaves in the body and whether it is safe and tolerable.
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Why People with Epilepsy Get More Infections
This study tests whether anti-seizure medicines affect immune function and infection risk in people with epilepsy.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.