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Epilepsy Learning Healthcare System (ELHS)

This study, called the Epilepsy Learning Healthcare System (ELHS), is an effort to improve care for people with epilepsy. It's not testing a new medicine, but rather using information gathered during regular epilepsy care to learn how to improve seizure control and quality of life. Doctors, patients, and researchers work together to use this information. The study aims to measure how often seizures occur, if people become seizure-free, and their quality of life. You can join if you are already receiving care at an ELHS site. There are no age restrictions, and both males and females can participate. The study is currently unclear on its status and plans to include 100,000 people.

Study design
This is an observational study, meaning researchers will collect information during your regular care. It aims to include 100,000 participants.
What's involved
You would be included in a registry that collects data during your standard epilepsy care. The record does not specify additional visits or procedures beyond your usual care.
Compensation
Not stated in the trial record.
Follow-up
Your seizure frequency, seizure freedom, and quality of life will be measured until February 2099.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06265103

Epilepsy Learning Healthcare System (ELHS)

Recruiting
Not specifiedAll AgesObservational
Epilepsy Foundation of America
~100,000 participants
Updated 2024-08-30 on ClinicalTrials.gov
What's tested:Clinical care and quality improvement

At a glance

Recruiting sites
10 of 13 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Seizure Frequency
Measured over 02/2099
+3 more outcomes measured

Conditions

Epilepsy
Seizure Disorder
Neurologic Disorder
Rare Diseases

Explore related trials

Seizure Disorder

Where it's being run

13 sites across 8 states
Ohio3
California2
Massachusetts2
Pennsylvania2
Arizona1
Colorado1
Maryland1
Texas1

Study leadership

  • Brandy Fureman, PhD · PRINCIPAL_INVESTIGATOR · Epilepsy Foundation

Who to contact

Brandy E Fureman, PhD
[email protected]
2404767127
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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

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.

What this trial measures

  • Seizure Frequency02/2099

    \*Seizure frequency: A record of the number of seizures gathered from patient records, journal, or calendar OR the average or typical recent seizure frequency, often expressed as the average daily, weekly, or monthly seizure frequency since the last visit.

  • Seizure Freedom02/2099

    Percent of all patients with visits within the time interval who have had no seizures in the last 12 months. This is a population outcome metric.

  • Quality of Life documentation02/2099

    Percent of all visits at which a QOL assessment\* is completed by the patient. This is a visit-based process metric.

  • Screening for Barriers to Medication Adherence02/2099

    Percent of all visits at which a Barriers to Medication Adherence Tool is completed by the patient.