Epilepsy Learning Healthcare System Network Welcomes New Clinical Sites Enhancing Care and Outcomes for People with Epilepsy

Dr. Lidia Moura to Lead Data Efforts to Improve Epilepsy Care and Accelerate Research

Monday, September 6, 2021

Bowie, Md. — The Epilepsy Foundation and the Epilepsy Learning Healthcare System (ELHS) network today announced it has welcomed new clinical sites to ELHS, a multi-stakeholder collaboration to improve outcomes by implementing best practices and continual learning. Launched in 2018 with six clinical sites, ELHS is designed to gather data about treatment for people with epilepsy from clinics around the country and analyze it centrally to identify practices that lead to better outcomes. To date, there are a total of 14 participating clinical sites who are working together with 19 community organizations to enhance the way people with epilepsy receive integrated, personalized care and services. The participating clinical sites are:

  • Akron Children’s Hospital (Ohio)
  • Barrow Neurological Institute (Ariz.)
  • Brigham and Women’s Hospital (Mass.)
  • Cincinnati Children’s Hospital Medical Center (Ohio)
  • Children’s Healthcare of Atlanta (Ga.)
  • Children’s Hospital Los Angeles (Calif.)
  • Children’s Hospital of Orange County (Calif.)
  • Children’s Hospital of Philadelphia (Pa.)
  • Keck School of Medicine of the University of Southern California (Calif.)
  • Massachusetts General Hospital (Mass.)
  • Penn State Health Children’s Hospital (Penn.)
  • University of Cincinnati Medical Center (Ohio)
  • University of Colorado Anschutz Medical Campus (Colo.)
  • University of Texas Southwestern Children’s Health (Texas)

ELHS is transforming care by enhancing opportunities for people with epilepsy and their families, community services providers, clinical providers, researchers, and health system leaders to work together on collaborative quality improvement (QI) projects and population health studies. As of July 2021, the ELHS Data Registry includes data from nearly 4,000 unique patients and 9,000 encounters, from six pediatric and adult clinical centers. Data includes provider and patient-reported information in areas such as seizure type and frequency, barriers to medication adherence, medications and side effects, quality of life, mental health, and women’s health.

In addition, the Epilepsy Foundation recently appointed Lidia Moura, MD, PhD, MPH, as director of Population Health Management and Sciences. In this role, Dr. Moura will support ELHS strategic goals of improving overall outcomes for people with epilepsies by directing the cutting-edge technology and analytical systems that utilize data for continuously improving epilepsy care, patient self-management, and identifying cohorts for clinical trials.

“We are thrilled to be expanding the ELHS network to more communities and strengthening our ability to improve population health with Dr. Moura’s new role,” said Brandy Fureman, PhD, Chief Outcomes Officer, Epilepsy Foundation, and ELHS Principal Investigator. “The addition of these pioneering clinical and community teams provides more opportunities to engage with patients in other parts of the country and gather outcomes data that will help improve the lives of people with epilepsy.”

Dr. Moura is a neurologist and health services researcher in the Neurology Department at Massachusetts General Hospital and assistant professor of Neurology at Harvard Medical School. Since 2018, she has led the Data Coordinating Center for ELHS, which has generated population management reports and new knowledge about patient-reported seizure freedom and quality care information from multiple academic institutions in the ELHS network. Dr. Moura brings clinical and analytical expertise working with large administrative databases, electronic health records, and patient-reported outcomes to help accelerate innovative epilepsy research in a timeframe that matters. She will work closely with leaders of the Epilepsy Foundation to foster a culture of innovation, collaboration, excellence, and diversity.

To learn more about ELHS, visit epilepsy.com/ELHS and check out the 2021 ELHS publication. For additional inquiries, contact elhs@efa.org.

About Epilepsy

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.

About the Epilepsy Foundation

With a network of partners throughout the United States, the Epilepsy Foundation is leading the fight to overcome the challenges of living with epilepsy. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding epilepsy research and supporting epilepsy investigators and specialists in their early careers. In partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 600,000 people in seizure recognition and first aid. The Epilepsy Foundation continues to focus on serving the epilepsy community through advocacy, education, direct services and research for new therapies. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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Contact Name: 
Jackie Aker
Contact Phone: 
(310) 846-9272
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Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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