Early Life Epilepsy Study

The Early Life Epilepsy Natural History Project

The Early Life Epilepsy Natural History Project is a study that aims to define and identify the areas where children with early life epilepsies face difficulties and how these issues evolve over time.

The information that comes from this project can be used to inform parents, educate providers, and facilitate trials of new therapies in the future.

The project also strives to answer the questions that parents of children with early life epilepsies have and to establish a platform that future studies can utilize in defining the different challenges children with epilepsy face and the impact on the family

What is Natural History and what does this study measure?

Natural history refers to the all-encompassing study of a disease from the very beginning and how it changes over time. In this study, we are looking not only at seizures but also sleep, eating, fine motor, mobility, and other important areas identified by other parents. We are looking at how each of these variables evolves and changes as children move through childhood and adolescence to adulthood. The questions in this survey were selected or designed by parents of children with epilepsy and providers to reflect what they feel was most relevant and important to their daily experiences.

Who will the results impact?

The results of this study will be shared with family groups, the general public, treating physicians, and trained researchers. We hope to use this information to inform anyone and everyone about what these early life epilepsies "look like" and how they affect children and their families.

The goal is for this to help parents of newly diagnosed children understand what to expect, improve treatment and care from epileptologists and other providers, and to support the development of personalized clinical trials in the future.

What do I need to do?

If you chose to participate in this study, you will fill out an online questionnaire here. This would be accessible any time you log in so you would not need to fill it all out at once, although we encourage you to complete the whole questionnaire no later than one week after starting it.