M. Kverneland, V. De Giorgis, L. Healy, K. Faltersack, TJW. McDonald, M. Armeno, MC. Cervenka, et al. (2026). ILAE dietary treatments task force special report: Maternal ketogenic diet exposure in epilepsy pregnancy registries-A call to action. Epilepsia open, 11(3), 702-709. https://doi.org/10.1002/epi4.70246

PubMed 41878801

[Abstract]
Ketogenic dietary therapies (KDTs) are increasingly used worldwide as a non-pharmacological treatment for epilepsy, including among people of childbearing potential. In many cases, KDTs allow for the reduction of antiseizure medications (ASMs) and lower drug exposure during pregnancy. However, limited evidence on maternal tolerability, fetal safety, and lactation outcomes has led to reluctance among healthcare providers to recommend KDTs during pregnancy. To inform evidence-based counseling, it is crucial to systematically collect data on maternal and offspring outcomes following KDT exposure. Over the past 25 years, international epilepsy pregnancy registries have provided robust data on the teratogenic risks of ASM exposure. Yet, no standardized dataset currently exists for documenting KDT exposure during pregnancy and lactation. The International League Against Epilepsy Ketogenic Dietary Treatments Task Force conducted a structured consensus process to develop the first international core dataset designed to capture maternal KDT exposure within existing pregnancy registries. This dataset provides a standardized, pragmatic framework for recording diet type, exposure duration, maternal-fetal outcomes, and lactation parameters. By harmonizing data collection across registries, this initiative aims to transform isolated case reports into aggregated, high-quality multicenter evidence, closing a critical knowledge gap. Incorporating these standardized questions into epilepsy pregnancy registries represents both a scientific necessity and a call to action to ensure safer, evidence-based care for women with epilepsy and their children. PLAIN LANGUAGE SUMMARY: More people are using ketogenic diets as a treatment for epilepsy around the world, including during pregnancy. It is not yet known if these diets are safe for mothers and babies during pregnancy and breastfeeding. Collecting standardized information about pregnancy outcomes in existing registries will inform us about the safety and effectiveness of these diets. The authors, who are either members of the International League Against Epilepsy dietary task force or specifically chosen by them for their expertise, followed a consensus process to suggest the addition of key standardized questions to the existing international pregnancy outcome registries for epilepsy.