Epilepsy Learning Healthcare System (ELHS)
Sponsored by Epilepsy Foundation of America
About this 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.
The Epilepsy Learning Healthcare System (ELHS; pronounced el-is) involves patients and families living with epilepsy, clinicians who provide epilepsy care (including pediatric and adult epileptologists, neurology nurses, and others), community services providers, as well as researchers with clinical research expertise in community-based, observational, interventional, implementation and dissemination studies. Each stakeholder agrees to work together to improve outcomes for people with epilepsy. NETWORK AIM The purpose of the network is to improve seizure control and quality of life for people with epilepsy through a learning healthcare system, in which clinical data are collected, analyzed, and rapidly disseminated to change practice. BACKGROUND Epilepsy is a chronic neurological disorde…
Where this study is enrolling (9)
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Barrow Neurological Institute Comprehensive Epilepsy Center
Phoenix, Arizona
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University of Southern California
Los Angeles, California
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Epilepsy Foundation
Bowie, Maryland
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Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH)
Boston, Massachusetts
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Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC)
Cincinnati, Ohio
Show all 9 locations
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University of Cincinnati Gardner Neuroscience Institute Epilepsy Center
Cincinnati, Ohio
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Children's Hospital of Philadelphia (CHOP)
Philadelphia, Pennsylvania
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Penn State Hershey
Hershey, Pennsylvania
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UT Southwestern Children's Dallas
Dallas, Texas
Who can participate
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.
Only the research team can confirm whether you qualify. The intake questionnaire is the best way to find out.
Completing a questionnaire on Clinably does not enroll you in a clinical trial or confirm your eligibility. Only the research team can determine whether you qualify to participate. These results are based on the information you provide and are intended to help you start a conversation with the research team.
Trial data sourced from ClinicalTrials.gov.