Registry tracking care and outcomes for people with epilepsy
Collects routine epilepsy care data to improve care for children and adults.
Plain-language title generated from the registry record
Registry title: Epilepsy Learning Healthcare System (ELHS)
Key facts
- Where
- Akron, Aurora, Boston, Bowie, Cincinnati, Dallas, Hershey, Los Angeles, Philadelphia, and Phoenix, United StatesSee the 13 sites
Where in United States
- Akron Children's HospitalAkron, United StatesNot yet recruiting
- UC Health University of Colorado AnshutzAurora, United StatesTaking people
- Brigham & Women's HospitalBoston, United StatesTaking people
- Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH)Boston, United StatesTaking people
- Epilepsy FoundationBowie, United StatesTaking people
- Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC)Cincinnati, United StatesNot yet recruiting
- University of Cincinnati Gardner Neuroscience Institute Epilepsy CenterCincinnati, United StatesTaking people
- UT Southwestern Children's DallasDallas, United StatesTaking people
- Penn State HersheyHershey, United StatesTaking people
- Children's Hospital Los AngelesLos Angeles, United StatesNot yet recruiting
- University of Southern CaliforniaLos Angeles, United StatesTaking people
- Children's Hospital of Philadelphia (CHOP)Philadelphia, United StatesTaking people
- Barrow Neurological Institute Comprehensive Epilepsy CenterPhoenix, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Epilepsy Foundation of America
- Trial code
- NCT06265103
- Record updated
- 30 August 2024
- Original description
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".Read full original descriptionShow less
Epilepsy Learning Healthcare System (ELHS) for Quality Care & Outcome Improvement
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.
Inclusion: 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: 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.