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Epilepsy Learning Healthcare System (ELHS)

RecruitingObservational study

Epilepsy Learning Healthcare System (ELHS) for Quality Care & Outcome Improvement

Who can join

All ages · All sexes

Full eligibility 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.

About the study

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.

What is being tested

Sponsor: Epilepsy Foundation of America · Participants: 100,000 · Started: Mar 20, 2019

Contact the study team

Official record on ClinicalTrials.gov — NCT06265103

Locations in the U.S.

ArizonaBarrow Neurological Institute Comprehensive Epilepsy Center, Phoenix
CaliforniaChildren's Hospital Los Angeles, Los Angeles (Not yet recruiting)
University of Southern California, Los Angeles
ColoradoUC Health University of Colorado Anshutz, Aurora
MarylandEpilepsy Foundation, Bowie
MassachusettsBrigham & Women's Hospital, Boston
Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH), Boston
OhioAkron Children's Hospital, Akron (Not yet recruiting)
Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC), Cincinnati (Not yet recruiting)
University of Cincinnati Gardner Neuroscience Institute Epilepsy Center, Cincinnati
PennsylvaniaPenn State Hershey, Hershey
Children's Hospital of Philadelphia (CHOP), Philadelphia
TexasUT Southwestern Children's Dallas, Dallas

Conditions

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.