Prior to having a patient-powered registry, we learned about the developmental outcomes after childhood epilepsy surgery through stories and anecdotes shared in social media groups, electronic mailing lists, in person from other parents, or from research studies mostly based on the experience of a single surgical facility. Although helpful, this information is not consolidated in a single area, is not tracked over time, and can be biased.
Today, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation gives families a platform to share their stories in a structured, meaningful way. This benefits our community in the long term by creating a ‘research-ready’ collection of data to report back to other parents, neurosurgeons, neurologists, and other aligned professionals like physical therapists and educators who care about the benefits and challenges after epilepsy surgery.
By answering questions about your child, you can help researchers find answers to important questions, such as: How many children walk after surgery? How many children require special education? Is learning to read a challenge after all epilepsy surgeries, or just some? Is early puberty after surgery common? Do behaviors improve after surgery? What percentage of children are able to transition into adulthood and find gainful employment, or live independently?
Your participation may also help to identify common challenges that our children experience after surgery, which have not previously been identified, or which may have been dismissed by doctors.