Few research studies address functional outcomes after epilepsy surgery – that is, motor, cognitive, sensory, and behavioral outcomes and skills that allow the child to achieve and succeed in life. The purpose of the Global Pediatric Epilepsy Surgery Registry is to enhance the understanding of pediatric epilepsy surgery by describing the full spectrum of causes, procedures, functional outcomes, and patient experiences. The Registry will be a comprehensive and secure database, fully compliant with HIPPA privacy regulations and U.S. laws that protect research participants.
Managed by The Brain Recovery Project, the Registry will:
- Provide a convenient, online platform for patients and their families to share their experiences with pediatric epilepsy surgery;
- Describe the pediatric epilepsy surgery population as a whole in ways that have never been done before, focusing on both personal patient/family stories and more traditional clinical outcomes;
- Accelerate and facilitate the planning research studies by helping researchers to locate potential research participants quickly and efficiently as well as generate hypotheses for future studies;
- Assist the pediatric epilepsy surgery clinical community with the development of recommendations and standards of care;
- Facilitate the development of patient-centered outcomes to be used in future research studies; and
- Allow The Brain Recovery Project to provide epilepsy surgery patients and their families with regular feedback on Registry data which will translate to real-time educational and advocacy opportunities and improve experiences and outcomes of epilepsy surgery families in the future.
We have received unconditional approval for this registry from an independent institutional review board. Right now the registry is in the development phase in RedCAP. We will announce on this web site when the Registry has been launched. Meanwhile, if you have any questions about the Registry, please contact Monika Jones at firstname.lastname@example.org.