protocolSection identificationModule nctId: NCT06265103, orgStudyIdInfo id: 20190407, briefTitle: Epilepsy Learning Healthcare System (ELHS), acronym: ELHS, statusModule overallStatus: RECRUITING, startDateStruct date: 2019-03-20, primaryCompletionDateStruct date: 2099-02-14, completionDateStruct date: 2099-02-14, studyFirstPostDateStruct date: 2024-02-20, lastUpdatePostDateStruct date: 2024-02-20, sponsorCollaboratorsModule leadSponsor name: Epilepsy Foundation of America, class: OTHER, descriptionModule briefSummary: 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., conditionsModule conditions: Epilepsy, conditions: Seizure Disorder, conditions: Neurologic Disorder, conditions: Rare Diseases, designModule studyType: OBSERVATIONAL, designInfo observationalModel: COHORT, timePerspective: CROSS_SECTIONAL, enrollmentInfo count: 1000, type: ESTIMATED, armsInterventionsModule interventions name: Clinical care and quality improvement, outcomesModule primaryOutcomes measure: Seizure Frequency, primaryOutcomes measure: Seizure Freedom, primaryOutcomes measure: Quality of Life documentation, eligibilityModule sex: ALL, stdAges: CHILD, stdAges: ADULT, stdAges: OLDER_ADULT, contactsLocationsModule locations facility: Barrow Neurological Institute Comprehensive Epilepsy Center, status: RECRUITING, city: Phoenix, state: Arizona, zip: 85013, country: United States, contacts name: Malinda Brooks-Busch, MPH, role: CONTACT, phone: 602-406-3443, email: Malinda.Brooks-Busch@dignityhealth.org, contacts name: Sue Herman, MD, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 33.44838, lon: -112.07404, locations facility: University of Southern California, status: RECRUITING, city: Los Angeles, state: California, zip: 90032, country: United States, contacts name: Alissa Maier, MPH, role: CONTACT, phone: 937-545-2627, email: Alissa.Maier@med.usc.edu, contacts name: Christi Heck, MD, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 34.05223, lon: -118.24368, locations facility: Epilepsy Foundation, status: RECRUITING, city: Bowie, state: Maryland, zip: 20716, country: United States, contacts name: Kathleen Farrell, MB BCh BAO, role: CONTACT, phone: 732-832-5983, email: kfarrell@efa.org, contacts name: Saniya Griffin, role: CONTACT, email: elhs@efa.org, contacts name: Brandy Fureman, Ph.D, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 38.94278, lon: -76.73028, locations facility: Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH), status: RECRUITING, city: Boston, state: Massachusetts, zip: 02114, country: United States, contacts name: Jason Raymond Smith, role: CONTACT, phone: 617-726-3311, email: JSMITH114@PARTNERS.ORG, contacts name: Daniel Hoch, MD, Ph.D, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 42.35843, lon: -71.05977, locations facility: Beth Israel Deaconess Medical Center's Comprehensive Epilepsy Program, status: NOT_YET_RECRUITING, city: Boston, state: Massachusetts, zip: 02215, country: United States, contacts name: Jennifer Sabbagh, role: CONTACT, phone: 617-975-8545, email: jsabbagh@bidmc.harvard.edu, contacts name: Bernard Chang, M.D., M.M.Sc., role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 42.35843, lon: -71.05977, locations facility: Cincinnati Children's Hospital Comprehensive Epilepsy Center (CCHMC), status: NOT_YET_RECRUITING, city: Cincinnati, state: Ohio, zip: 45229, country: United States, contacts name: Naima Griffin, role: CONTACT, phone: 513-636-9933, email: naima.griffin@cchmc.org, contacts name: Katie Holland, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 39.12713, lon: -84.51435, locations facility: University of Cincinnati Gardner Neuroscience Institute Epilepsy Center, status: NOT_YET_RECRUITING, city: Cincinnati, state: Ohio, zip: 45267, country: United States, contacts name: Lucy Mendoza, CCRP, role: CONTACT, phone: 513-558-3020, email: mendozlc@UCMAIL.UC.EDU, contacts name: David Ficker, MD, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 39.12713, lon: -84.51435, locations facility: Penn State Hershey, status: NOT_YET_RECRUITING, city: Hershey, state: Pennsylvania, zip: 17033, country: United States, contacts name: Jessica Beiler, MPH,CCRC, role: CONTACT, phone: 717-531-5656, email: jbeiler@pennstatehealth.psu.edu, contacts name: William Trescher, MD, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 40.28592, lon: -76.65025, locations facility: Children's Hospital of Philadelphia (CHOP), status: NOT_YET_RECRUITING, city: Philadelphia, state: Pennsylvania, zip: 19104, country: United States, contacts name: Nicholas Abend, role: CONTACT, email: abend@email.chop.edu, contacts name: Nicholas Abend, MD, MSCE, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 39.95233, lon: -75.16379, locations facility: UT Southwestern Children's Dallas, status: RECRUITING, city: Dallas, state: Texas, zip: 75063, country: United States, contacts name: Bonnie Jenkins, LCSW, role: CONTACT, phone: 214-456-0614, email: bonnie.jenkins@childrens.com, contacts name: Deepa Sirsi, MD, role: PRINCIPAL_INVESTIGATOR, geoPoint lat: 32.78306, lon: -96.80667, hasResults: False