2018 Pipeline Conference and Community Day Blog Series Continued

This year’s Epilepsy Foundation Pipeline Conference brought together some of the best minds and stakeholders in epilepsy treatment, therapeutic innovation, and product development to discuss new updates in treatment and care. Immediately following the conference, Community Day hosted people with epilepsy, their family and friends, and advocates in a day of education and empowerment.

Miss the first part of this series? Read Part 1: New Technology in Epilepsy Treatment and Care now. 

Part 2: Partnership Key to Breaking Down Barriers, Finding Solutions

Building Power Through Partnership

A consistent theme on the second day of #Pipeline2018 was the value of collaboration and the power of true partnerships. Here are three examples of how innovative partnerships are changing the epilepsy research landscape.

• Finding new therapies faster. The Tuberous Sclerosis Complex (TSC) Alliance presented on their TSC Preclinical Consortium, which is accelerating research and drug discovery through collaborative projects and data sharing among consortium members. The collaboration aims to advance the best therapeutic drugs available to the clinical stage by first testing the efficacy of candidate drugs.
• Bridging barriers between researchers and families. In a session on the value of registries, Bridge the Syngap shared how building relationships between families and researchers led to increased trust and improved participation in the Syngap1 patient registry. In-person meetings between families of people with Syngap1 and researchers helped provide education, answer medical questions, and empower families. After hosting meetings between families and researchers, Bridge the Syngap saw registry participation increase from approximately 90 participants to 121.
• Answering the hard questions. The Epilepsy Foundation’s Research Roundtable in Epilepsy showed the impact that collaboration between government, industry, and academia can have in epilepsy research. The 2016 Research Roundtable discussed the use of placebo in clinical trials. This work contributed to actual changes in U.S. Food and Drug Administration (FDA) policy to reduce placebo exposure in trial participants. This huge win helps keep future trial participants as safe as possible.

You Can Contribute

Want to be a partner in epilepsy research? There are many ways to be part of the conversation.

• Find a clinical trial. Treatments for epilepsy and seizures cannot advance without clinical trials. By enrolling in a clinical trial, you’ll help contribute to the development of new therapies for epilepsy and help advance epilepsy treatment and care. Visit our clinical trial portal to find a study that is right for you.
• Join a registry. Registries help gather information about people living with epilepsy to help guide research, treatment, and care. Interested in joining a registry? Check out these registries for women and the Rare Epilepsy Network.
• Donate to research. The Epilepsy Foundation won’t stop until we live in a world where there are no seizures and no side effects. Join us in working towards this goal by donating to research. Find out more about what our research program is doing in the March 2018 Research Quarterly.