Dr. Zachary Grinspan , associate professor of pediatrics and director of the Pediatric Epilepsy Program at Weill Cornell Medicine, has been awarded a four-year, $1.6 million CDC grant to undertake wide-reaching research aiming to produce a new, more detailed picture of childhood epilepsy.
The CEPIE study (Collaboration to Estimate the Pediatric Incidence of Epilepsy) will combine information from eight different sources—including Medicaid records, electronic health records, national health surveys and databases linking health information about mothers and their children—to determine how often epilepsy occurs in children in the United States. Epilepsy is estimated to affect about six in every 1,000 children, but the most recent national estimates are at least a decade old.
Additionally, Dr. Grinspan and his collaborators—who include Dr. Kristen Barbour from University of California at San Diego, who completed her pediatric neurology residency at Weill Cornell—will determine what types of epilepsy U.S. children have, who is most affected and what may predict the condition. The project will produce rapid initial estimates, followed by more detailed analyses of risk factors and exploratory work looking for geographic “hot spots” and “cold spots.”
“We know there are disparities of care in this country, and epilepsy is no exception,” said Dr. Grinspan, also an associate professor of population health sciences at Weill Cornell. “We’re eager to take this opportunity to be good stewards of public funding to do that work.”
The epilepsy landscape has changed dramatically since the last national estimates, particularly because scientists now know of more than 1,000 genes associated with the condition. Genetic testing has also prompted the formation of gene-specific advocacy groups, raising substantial amounts to support research and spurring physicians, scientists and drug companies to develop treatments.
“This makes the data we’re gathering critical, because pharmaceutical companies want to know how many of these kids are out there, and parents do too,” he said. “As a health system, it’s also crucial for us to know where these kids are, so we can open clinical trials and make sure the children we treat are getting absolute state-of-the-art care.”
Dr. Grinspan, a national leader in pediatric epilepsy research, has used large language models to enhance the efficiency of his work in recent years, but this is his first federally funded project to formally incorporate artificial intelligence, which he said could help solve a major problem in identifying rare epilepsies.
“Many of the rare diseases we take care of don’t have diagnosis codes. The only way to find them is to read the electronic health record notes, but that is an enormously laborious process,” he said. “Now we can use AI to do that work.”
Dr. Grinspan believes the CEPIE study could matter in three immediate ways: producing raw numbers that Congress and others could use to inform funding; promoting greater health equity among underserved and vulnerable populations, which preliminary data indicate are affected more often by epilepsy; and providing new clues about risk or protective factors.
“There are going to be some areas of the country that don’t see a lot of epilepsy,” he said. “Finding those places and talking to the doctors there—that is not something we’ve done in our field before.”