What care is administered relies on what caregivers know and need to know. Lately, biomedical discoveries, advances in biomedical technology, and implementation research have shown an ability to identify the knowledge that is needed when it is needed, but how to put that knowledge in the hands of caregivers has been a challenge. The Institute of Medicine, has one way of dealing with this problem, it is called the a Learning Healthcare System. This proposal presents how one group, 31 site Childhood Absence Epilepsy Network (CAEN), intends to become an LHS. In this proposal we describe how three sites: Cincinnati Children's Hospital Medical Center, Denver Children's Hospital and Children's Hospital of Philadelphia have agreed to act as a pilot for implementing NIH sponsored i2b2 technology and developing novel software applications that include natural language processing to extend that technology. This initial collaboration is called the Multi-Institutional Pediatric Epilepsy Decision Support System (MiPeds - pronounced my peads)

Public Health Relevance

Electronic health records contain information that not only is essential for clinical care, but also provides a learning laboratory to increase the quality of care. We propose to extend the existing i2b2 technology by develop disease specific data marts and tools for pediatric epilepsy.

National Institute of Health (NIH)
National Library of Medicine (NLM)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZLM1-ZH-C (01))
Program Officer
Sim, Hua-Chuan
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Cincinnati Children's Hospital Medical Center
United States
Zip Code
Wagenman, Katherine L; Blake, Taylor P; Sanchez, Sarah M et al. (2014) Electrographic status epilepticus and long-term outcome in critically ill children. Neurology 82:396-404
Sanchez Fernandez, Ivan; Abend, Nicholas S; Agadi, Satish et al. (2014) Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG). Seizure 23:87-97
Sanchez Fernandez, Ivan; Abend, Nicholas S; Arndt, Daniel H et al. (2014) Electrographic seizures after convulsive status epilepticus in children and young adults: a retrospective multicenter study. J Pediatr 164:339-46.e1-2
Connolly, Brian; Matykiewicz, Pawel; Bretonnel Cohen, K et al. (2014) Assessing the similarity of surface linguistic features related to epilepsy across pediatric hospitals. J Am Med Inform Assoc 21:866-70
Sanchez, Sarah M; Arndt, Daniel H; Carpenter, Jessica L et al. (2013) Electroencephalography monitoring in critically ill children: current practice and implications for future study design. Epilepsia 54:1419-27
Berg, Anne T; Baca, Christine B; Loddenkemper, Tobias et al. (2013) Priorities in pediatric epilepsy research: improving children's futures today. Neurology 81:1166-75
Pestian, J; Matykiewicz, P; Holland-Bouley, K et al. (2013) Selecting anti-epileptic drugs: a pediatric epileptologist's view, a computer's view. Acta Neurol Scand 127:208-15