Skip to main content
← All trials
EpilepsyChildren's health

What this study is

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's being tested

  • Clinical care and quality improvement

    Intervention · OTHER

    All eligible patients at each center will be included in the registry for clinical care, quality improvement and other activities that do not meet the regulatory requirements of human subjects research. Use of data for these purposes is not considered to be a human subjects research activity and will be covered under a Business Associates Agreement and a Participation and Data Use Agreement.

Study details

Official title
Epilepsy Learning Healthcare System (ELHS) for Quality Care & Outcome Improvement
Sponsor
Epilepsy Foundation of America
Conditions
Epilepsy · Seizure Disorder · Neurologic Disorder · Rare Diseases
Enrolling
100,000 people
Starts
2019-03-20
Est. completion
2099-02-14
Record
View on ClinicalTrials.gov ↗