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The Unmet Need

It can be hard to get a grasp on the epilepsy research landscape and understand which groups are looking for research partnerships.

Our Solution: Developing digital tools to support research infrastructure

As the leading resource for epilepsy information online, we believe in creating digital tools that can accelerate epilepsy research. Our purpose is to ensure a rich ecosystem for research and discovery.

Currently, we offer three digital tools: Epilepsy Foundation My Seizure Diary, our Clinical Trials Portal, and the Epilepsy Pipeline Tracker

Epilepsy Foundation My Seizure Diary

The Epilepsy Foundation My Seizure Diary was built as a tool to help people record, track, and manage their seizures, treatments, other health events, and behaviors. The diary also allows users to record medical and social history, medications, side effects, moods or other personal experiences. The diary also can help with understanding seizure types, keeping track of medications and when rescue therapies were used, and identifying triggers and other health concerns. Users can also set reminders for when to take medicines, refill prescriptions, and go to doctor appointments.

In 2017, we upgraded the features of the diary so that it can be used by people participating in clinical trials and other research studies. A diary owner may also share their diary with a family member, caregiver or clinician if they wish.

To download the diary, please visit: diary.epilepsy.com

To get more information about using My Seizure Diary in your clinical research study, please contact: diary@efa.org

Clinical Trials Portal

Eighty percent of people with epilepsy and caregivers surveyed said that they would consider participating in a clinical research study. When we asked people with epilepsy why they did not participate in clinical trials, the number one response was that their doctor had never talked with them about clinical trials. To bring research studies to people willing to participate in them, we launched our Clinical Trials Portal in 2017.

The Clinical Trials Portal has three main goals:

  • To educate our community on the value of clinical research and opportunities to participate
  • To connect people to clinical trials faster
  • To increase enrollment in key clinical research studies

The portal includes:

  • Information on actively recruiting trials, studies currently in follow-up, and completed clinical trials.
  • Search function to find a clinical trial near you
  • Videos and infographics that explain some of the clinical trials

To get information about listing a study on the Clinical Trials Portal, please contact: Dr. Kathleen Farrell at kfarrell@efa.org.

Epilepsy Pipeline Tracker

The goal of the Epilepsy Pipeline Tracker is to track the progress of drugs and devices in development throughout the clinical pipeline starting from early stages to regulatory approval and commercial availability. This resource will help the community to understand what therapies and diagnostic tools are moving towards the clinic (and how close they are), will inform researchers about ongoing clinical trials, and will provide companies with information about the competitive landscape, and will also allow them to update the community on the progress of their product.

To provide an update or addition to the Pipeline Tracker, please contact: sdumanis@efa.org