Dup15q Alliance has partnered with the Brain Recovery Project to see if surgical interventions “work” on Dup15q Syndrome related seizures.
The Global Pediatric Epilepsy Surgery registry is a research project that allows families to share their experiences with and without epilepsy surgery in childhood by completing a series of surveys. The data collected will be used to answer some of the most important questions about pediatric epilepsy surgery, such as:
What can a child do over time after epilepsy surgery?
What post-operative therapies and interventions are useful?
What are some unusual symptoms or medical issues that happen after epilepsy surgery that parents report but doctors may be unaware of?
What are the issues that concern parents?
What is the impact of epilepsy surgery on a child’s quality of life?
What surgical techniques work best and for whom?
The main purpose of the registry is to gather information that can be used to understand the developmental trajectory after epilepsy surgery. Researchers can then use the registry to analyze the information, look for changes in a child’s function over time, determine whether some surgical procedures are more effective at stopping seizures than others, recruit participants to their approved studies, and collect new information by adding new questions to the registry.