What Are Developmental and Epileptic Encephalopathies?
Developmental and Epileptic Encephalopathies (DEE) are a severe form of epilepsy that affects learning and development and often begins in infancy or childhood. Lennox-Gastaut Syndrome (LGS) is one example of a DEE but many other diagnoses fall within this spectrum. For those affected and their families, understanding the symptoms of DEE can be an emotional journey.
The Epilepsy Foundation shares some other symptoms related to the condition such as:
- behavioral and developmental delays
- movement and balance issues
- and delayed language and speech issues being a few.
The challenges of DEE can be particularly difficult, requiring specialized care and understanding. It’s important to recognize that every story is unique and that seeking help and connection can make a profound difference.
The journey through Developmental and Epileptic Encephalopathies can feel overwhelming at times, but it’s essential for families to know they are not alone.
There’s a growing community of caregivers and individuals facing similar challenges and family resources can be found at DEE-P Connections. Treatment options are being explored to improve the quality of life for both children and adults.
Together, we can foster a supportive environment where shared experiences and resources can empower families to navigate this journey with hope and resilience.
About the Investigational Drug
The DEEp OCEAN clinical study is assessing the safety of the investigational drug and its potential to reduce the number of seizures in children and adults with DEE.
The term “study drug” will refer to either the investigational drug or the placebo where both solutions will look and taste the same. The study drug will be provided as a liquid that will be administered orally or through a feeding tube.
Why Participate?
Taking part in a clinical study is a big decision, but it is also a chance to join us in the quest to help advance treatment for Developmental and Epileptic Encephalopathies.
There are no proven benefits associated with participating in a clinical study. However, participation in the DEEp OCEAN study may reduce seizure frequency for participants assigned to the study drug group. Additionally, participants will receive ongoing medical management and assessments throughout the study and optional testing with the goal of identifying mutations associated with DEE in participants.
Deciding to participate is a personal decision and entirely up to you and your loved one. It is essential to feel comfortable and informed before joining a clinical study. Please discuss any questions with your healthcare provider.