The Center

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​About the Center

Epilepsy is the most common childhood neurologic condition in the US with approximately 470,000 children aged birth to 18 years affected.1,2 Children and youth with epilepsy (CYE) are at higher risk for developmental, intellectual, and mental health comorbidities requiring complex, coordinated systems of primary and specialty care.3 The number of child neurologists is estimated to be at least 20% below the national need, resulting in limited access to care for CYE, especially in rural and medically underserved communities.1,4 

To this end, the mission of the National Coordinating Center for Epilepsy: Innovations in Access to Care for Children and Youth with Epilepsy (Center) is to support those working to improve access to coordinated, comprehensive, quality care for CYE, particularly in medically underserved and/or rural areas across the life-course. Therefore, the goals of the Center are to: 

  1. Provide national leadership by building partnerships, sharing resources on best practices, and developing policies to improve access to coordinated and comprehensive care for CYE;

  2. Provide infrastructure and technical assistance to the Transforming Health Care for CYE  program grantees (grantees) (HRSA-19-060). 

To accomplish these goals, the AAP leverages its expertise, structure, and partnerships with stakeholders to build on existing infrastructure and create a sustainable system of coordinated care for all CYE through individual, provider, and national strategies, monitored through comprehensive evaluation plans. Components of the medical home – accessibility, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care – are integrated into each of the activities to ensure that the needs of all CYE are met across their life-course.  

Project Staff

Debra Waldron, MD, MPH, FAAP
Medical Director 

Trisha Calabrese, MPH
Principle Investigator 

Sarah Hueneke, MPH

Alexis Katzenbach, MPH
Program Coordinator

Amy Shah, MPH
ECHO Manager

The Coordinating Center is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) to establish a multifaceted community-based system of care that ensures that Children and Youth with Epilepsy (CYE) have access to the medical, social, and other supports and services that they require to achieve optimal health outcomes and improved quality of life. This Web site is funded by the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA).

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