Epilepsy Learning Healthcare System (ELHS)

Recruiting now

Conditions studied: Epilepsy, Seizure Disorder, Neurologic Disorder, Rare Diseases

In brief

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.

Key facts

Study ID

NCT06265103

Run by

Epilepsy Foundation of America

People needed

100000

Starts

2019-03-20

Expected to finish

2099-02-14

Last updated by the study team

2024-08-30

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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

You may not qualify if…

• 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

• UT Southwestern Children's Dallas — Dallas, Texas, United States (enrolling)
• Penn State Hershey — Hershey, Pennsylvania, United States (enrolling)
• Children's Hospital of Philadelphia (CHOP) — Philadelphia, Pennsylvania, United States (enrolling)
• Barrow Neurological Institute Comprehensive Epilepsy Center — Phoenix, Arizona, United States (enrolling)
• University of Southern California — Los Angeles, California, United States (enrolling)
• UC Health University of Colorado Anshutz — Aurora, Colorado, United States (enrolling)
• Epilepsy Foundation — Bowie, Maryland, United States (enrolling)
• Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH) — Boston, Massachusetts, United States (enrolling)
• Brigham & Women's Hospital — Boston, Massachusetts, United States (enrolling)
• University of Cincinnati Gardner Neuroscience Institute Epilepsy Center — Cincinnati, Ohio, United States (enrolling)
• Children's Hospital Los Angeles — Los Angeles, California, United States
• Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC) — Cincinnati, Ohio, United States
• Akron Children's Hospital — Akron, Ohio, United States

Full record on ClinicalTrials.gov

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