Research Archives

Understanding ASOs & Informed Consent

Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…

Aumento del acceso a ensayos clínicos y nuevos tratamientos en las EDE

This is a recording of the webinar held on April 29, 2024. This is a conversation about a promising clinical trial model for new epilepsy treatments that accelerates access to…

Por qué son importantes los EEG y qué pueden revelar

This is the recording of the DEE-P webinar which was recorded on October 12, 2023. Have you ever wondered about is there was more we could learn from the EEG…

No diagnosticado

This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…

GRABACIÓN – Medidas anticipadas de resultados para las poblaciones gravemente afectadas

Building a Consortium to Advance Outcome Measures for Severely Affected Populations This is a recording of the second workshop, held November 11th 2021, focused on Building a Consortium to Advance…

GRABACIÓN – EVALUACIÓN DEL ESTADO Y OPORTUNIDADES

ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS This is a recording of day one of the workshop, held November 4th 2021, and was…

¿Qué puedes hacer TÚ para ayudar a curar las epilepsias?

This is a recording of webinar which was held on October 20, 2021. This special session brought together the leaders from government, clinician-researchers, and advocates who devoted two years to…

¿Qué tan eficaz es su atención para la epilepsia?

We all want our kids to get the best care possible. But how effective has your child’s epilepsy care been? What can we do to improve outcomes? This conversation—with three…

El ABC de los ensayos clínicos, parte 2: lo que toda familia de enfermedades raras debe saber

This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – What Every Rare Family Should Know,” which was held on October 21st, 2020. Our Caregiver…

El ABC de los ensayos clínicos, parte 1: conceptos básicos

This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – Get Your Community Prepared,” which was held on September 14th, 2020. This webinar included a…