Rare epilepsies are a devastating group of diseases that begin in childhood, and often cause profound neurologic, medical, and psychiatric disabilities. There are reliable epidemiologic estimates for only a few of these diseases.
Dr. Grinspan developed unique regular expression keywords, which when combined with INSIGHT’s data identified affected individuals treated by multiple academic medical centers, improving the surveillance and epidemiology of rare epilepsies.
Improved epidemiological estimates have guided clinical care, prioritized research initiatives, and helped caregivers understand these devastating diseases. Text searching specifications (“regular expressions”) have helped centers identify rare epilepsies to support surveillance, research, quality improvement, care management, and referral to advocacy organizations.