Epilepsy Learning Healthcare System (ELHS)

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". 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.

Conditions

Epilepsy, Seizure Disorder, Neurologic Disorder, Rare Diseases

Study Overview

Study Details

Study overview

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.

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

Epilepsy Learning Healthcare System (ELHS)

Condition
Epilepsy
Intervention / Treatment

-

Contacts and Locations

Phoenix

Barrow Neurological Institute Comprehensive Epilepsy Center, Phoenix, Arizona, United States, 85013

Los Angeles

Children's Hospital Los Angeles, Los Angeles, California, United States, 90027

Los Angeles

University of Southern California, Los Angeles, California, United States, 90032

Aurora

UC Health University of Colorado Anshutz, Aurora, Colorado, United States, 80045

Bowie

Epilepsy Foundation, Bowie, Maryland, United States, 20716

Boston

Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH), Boston, Massachusetts, United States, 02114

Boston

Brigham & Women's Hospital, Boston, Massachusetts, United States, 02115

Akron

Akron Children's Hospital, Akron, Ohio, United States, 44308

Cincinnati

Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC), Cincinnati, Ohio, United States, 45229

Cincinnati

University of Cincinnati Gardner Neuroscience Institute Epilepsy Center, Cincinnati, Ohio, United States, 45267

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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
  • * 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.

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Epilepsy Foundation of America,

Brandy Fureman, PhD, PRINCIPAL_INVESTIGATOR, Epilepsy Foundation

Study Record Dates

2099-02-14