Leads: Zachary Grinspan (NYC-CDRN)
Co-Lead(s): Dale Hesdorffer (REN)
Parent/Patient Lead: Barbara Kroner (REN), Danielle Boyce
The Epilepsy Research Interest Group (RIG) includes parents of children with epilepsy, clinicians who care for children with epilepsy, and researchers dedicated to the study of epilepsy in children. Our purpose is to promote patient centered research that will lead to improved health and well being of children with epilepsy and their caregivers. To accomplish this goal, we are enthusiastic to work with the Pediatric Collaborative Research Group to understand the value of the PCORI funded Clinical Data Research Networks and the Patient Powered Research Networks for pediatric epilepsy research. Specific activities will include (1) prioritizing research questions, (2) exploring funding opportunities, and (3) disseminating observations to our colleagues in the pediatric epilepsy research community.
Prioritization of condition-specific research topics:
- The process will involve multiple stakeholders from the epilepsy community: researchers, clinicians, patients, and family members
- An online platform will be used that will allow participants to rank and edit research topics.
- If you would like to take part in this activity, please send us an email at email@example.com