Epilepsy Learning Healthcare System (ELHS)
Recruiting · NCT06265103 · Observational (researchers observe without assigning treatment) · Lead sponsor: Epilepsy Foundation of America
View the official record on ClinicalTrials.gov →Interventions studied
What this trial is about
The Epilepsy Learning Health System (ELHS) is a quality improvement and research network to improve outcomes for people with epilepsy. The ELHS is designed as a model of value-based chronic care for epilepsy as envisioned by the National Academies of Medicine Committee in their landmark reports "The Learning Health System" and "Epilepsy Across the Spectrum: Promoting Health and Understanding". The ELHS network is a collaboration among clinicians, patients and researchers that promotes the use of data for multiple purposes including one-on-one clinical care, population management, quality improvement and research. The ELHS Registry includes data on children and adults with epilepsy collected during the process of standard epilepsy care. These data are used to create population health reports and to track changes in outcomes over time. ELHS teams use quality improvement methods, such as Plan-Do-Study-Act (PDSA) cycles, to continuously learn how to improve care.
Who can take part
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 is running
13 locations listed across 8 US states.
- Barrow Neurological Institute Comprehensive Epilepsy Center - Phoenix, Arizona, United States
- Children's Hospital Los Angeles - Los Angeles, California, United States
- University of Southern California - Los Angeles, California, United States
- UC Health University of Colorado Anshutz - Aurora, Colorado, United States
- Epilepsy Foundation - Bowie, Maryland, United States
- Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH) - Boston, Massachusetts, United States
- Brigham & Women's Hospital - Boston, Massachusetts, United States
- Akron Children's Hospital - Akron, Ohio, United States
- Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC) - Cincinnati, Ohio, United States
- University of Cincinnati Gardner Neuroscience Institute Epilepsy Center - Cincinnati, Ohio, United States
- Penn State Hershey - Hershey, Pennsylvania, United States
- Children's Hospital of Philadelphia (CHOP) - Philadelphia, Pennsylvania, United States
- UT Southwestern Children's Dallas - Dallas, Texas, United States