I am interested in how analysis of large datasets can answer core questions for children with epilepsy. My current epilepsy projects include:
* RENYC - Rare Epilepsies in New York City. Rare epilepsies are a devastating group of diseases that begin in childhood, and are often associated with profound neurologic, medical, and psychiatric disabilities. We are working to collect electronic physician notes from five academic medical centers in New York City to identify cases in order to understand the essential epidemiology of this vulnerable and medically complex population (incidence, prevalence, mortality, comorbidity burden, and use of health services). Using new methods for surveillance, we will develop and characterize an easy-to-share tool to find rare epilepsies through an automated search of clinical notes.
* NeuroPICU Dashboard. We are developing tailored visualizations of clinical data to improve physician decision making for children with neurological diseases in the ICU. We aim to integrate cardio-pulmonary physiology, neurophysiology, EEG, medications, and laboratory values into a unified dashboard to assist ongoing care.
* Comparative Effectiveness for infantile Spasms. We will study a devastating epilepsy of infancy that can cause permanent neurodevelopment disability. There are three recommended treatments: ACTH, oral steroids, and vigabatrin. We will compare these treatments for infantile spasms using several large datasets. The grant is a four-center collaboration with national leaders in pediatric epilepsy research (Nationwide Children’s Hospital, University of Michigan, Children’s Hospital Colorado)
* Health Information Exchange Usage by Specialists. I am developing survey instruments to better understand the awareness and use of health information exchange technologies among specialists in the state of New York.
I also participate in health services research projects, with a particular focus on high utilizers. Current projects include:
* PCORI CDRN Health System Demonstration Project. We are using data from three Clinical Data Research Networks to predict preventable high utilization among adults in seven high risk categories.
* PCORI Health Systems Research Clinical Research Group. We are creating a working group to promote health systems research using data from the PCORI infrastructure.