A network to improve care for people with epilepsy
Epilepsy Learning Healthcare System (ELHS) for Quality Care & Outcome Improvement
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 |
|---|---|
| Enrollment | 100000 (estimated) |
| Sex | All |
| Sponsor | Epilepsy Foundation of America Academic / other |
| Locations | 13 sites (Phoenix, Arizona and 12 other locations) |
| Trial ID | NCT06265103 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: Other studies have shown success with similar collaborative approaches in improving healthcare outcomes, making this initiative a promising model.
Eligibility criteria
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 this trial is running
Phoenix, Arizona and 12 other locations
- Barrow Neurological Institute Comprehensive Epilepsy Center — Phoenix, Arizona, United States (Recruiting)
- Children's Hospital Los Angeles — Los Angeles, California, United States (Not_yet_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)
- 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)
- 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)
Study contacts
- Principal investigator: Brandy Fureman, PhD — Epilepsy Foundation
- Study coordinator: Brandy E Fureman, PhD
- Email: bfureman@efa.org
- Phone: 2404767127
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.