What is this study trying to find out about epilepsy?

This study is exploring how collecting and using data from people with epilepsy can improve care and outcomes. It aims to develop a learning healthcare system that helps doctors and patients work together to better control seizures and enhance quality of life. The Epilepsy Foundation of America supports this effort to advance epilepsy care nationwide.

Who may be eligible for this epilepsy clinical trial?

Anyone who is in an established care relationship with a participating ELHS site and has epilepsy may be eligible. This includes children and adults of all genders. People only seeking a second opinion or those without epilepsy are not eligible. Please review eligibility criteria for more details.

Is there any cost to participate in this epilepsy clinical trial?

Study-related care, including data collection and all trial visits, is provided at no cost. However, personal travel or other expenses may vary and are not guaranteed to be covered. Participants should consider these possible costs when deciding to join.

Actively Recruiting

All Genders

ID06265103

Epilepsy Learning Healthcare System ELHS to Improve Care and Outcomes for People with Epilepsy

Led by Epilepsy Foundation of America · Updated on 2024-08-30

100000

Participants Needed

Research Sites

N/A

Total Duration

AI-Summary

What this Trial Is About

Researchers are studying epilepsy through the Epilepsy Learning Healthcare System ELHS, a network designed to improve outcomes for people with epilepsy by using a model of value-based chronic care. This network brings together patients, families, clinicians, community service providers, and researchers to collect and analyze data from children and adults with epilepsy. The goal is to address the wide variations in epilepsy care and outcomes to enhance seizure control and quality of life. The network works by implementing quality improvement methods within a chronic care model. Participating centers collect standardized epilepsy care data and use rapid feedback cycles to monitor outcomes. Changes based on evidence-based recommendations are introduced to improve care processes and clinical results. The collaborative effort includes monthly data reviews and sharing across centers to learn from variations and celebrate improvements. Participants contribute data during their usual epilepsy care visits, which is collected into a registry used for clinical care, quality improvement, and research activities. The research team tracks seizure frequency, seizure freedom, quality of life, and barriers to medication adherence. These measures are reported regularly and shared network-wide to support continuous learning and care improvement. The study is ongoing with no specified end date, involving both children and adults with epilepsy.

CONDITIONS

Brief Title

Epilepsy Learning Healthcare System (ELHS)

Who Can Participate

All Genders

Eligibility Criteria

You may qualify if you...

Patient is in an established care relationship with the ELHS site

You will not qualify if you...

Patients not currently in or expecting to be in an established care relationship with the ELHS site (for example, patients seen only for second opinions)
Patients who do not meet criteria for a diagnosis of epilepsy after evaluation will not be included in epilepsy-specific analyses, though they may remain in the registry for other purposes if applicable

Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

1 visit (in-person)

Surveillance

Duration - Ongoing throughout participation

Participants who undergo routine epilepsy care are observed, with data collected routinely to assess seizure frequency, seizure freedom, quality of life, and medication adherence barriers.

Monthly data reporting and feedback sessions