RECRUITING

Epilepsy Learning Healthcare System (ELHS)

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Conditions

EpilepsySeizure DisorderNeurologic DisorderRare DiseasesFocal seizuresGeneralized seizuresBrain conditionsDevelopmental disordersChronic conditionHealth disparitySeizurePost-traumatic epilepsy (PTE)Post-stroke epilepsy

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

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

Quick Facts

Study Start:2019-03-20
Study Completion:2099-02-14
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06265103

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.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * In order to be eligible to participate in this registry-based study, an individual must meet all of the following criteria:
  2. * Patient is in an established care relationship with the ELHS site
  1. * An individual who meets any of the following criteria will be excluded from participation in this registry-based research study:
  2. * 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).
  3. * 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.

Contacts and Locations

Study Contact

Brandy E Fureman, PhD
CONTACT
2404767127
bfureman@efa.org
Kathleen Farrell, MB BCH BAO
CONTACT
732-832-5983
kfarrell@efa.org

Principal Investigator

Brandy Fureman, PhD
PRINCIPAL_INVESTIGATOR
Epilepsy Foundation

Study Locations (Sites)

Barrow Neurological Institute Comprehensive Epilepsy Center
Phoenix, Arizona, 85013
United States
Children's Hospital Los Angeles
Los Angeles, California, 90027
United States
University of Southern California
Los Angeles, California, 90032
United States
UC Health University of Colorado Anshutz
Aurora, Colorado, 80045
United States
Epilepsy Foundation
Bowie, Maryland, 20716
United States
Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH)
Boston, Massachusetts, 02114
United States
Brigham & Women's Hospital
Boston, Massachusetts, 02115
United States
Akron Children's Hospital
Akron, Ohio, 44308
United States
Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC)
Cincinnati, Ohio, 45229
United States
University of Cincinnati Gardner Neuroscience Institute Epilepsy Center
Cincinnati, Ohio, 45267
United States
Penn State Hershey
Hershey, Pennsylvania, 17033
United States
Children's Hospital of Philadelphia (CHOP)
Philadelphia, Pennsylvania, 19104
United States
UT Southwestern Children's Dallas
Dallas, Texas, 75063
United States

Collaborators and Investigators

Sponsor: Epilepsy Foundation of America

  • Brandy Fureman, PhD, PRINCIPAL_INVESTIGATOR, Epilepsy Foundation

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2019-03-20
Study Completion Date2099-02-14

Study Record Updates

Study Start Date2019-03-20
Study Completion Date2099-02-14

Terms related to this study

Keywords Provided by Researchers

  • Focal seizures
  • Generalized seizures
  • Brain conditions
  • Developmental disorders
  • Rare diseases
  • Chronic condition
  • Health disparity
  • Seizure
  • Post-traumatic epilepsy (PTE)
  • Post-stroke epilepsy

Additional Relevant MeSH Terms

  • Epilepsy
  • Seizure Disorder
  • Neurologic Disorder
  • Rare Diseases