Ketogenic Diet Therapy for Epilepsy During Pregnancy and Lactation: An International Survey Exploring Clinician Perspectives and Experience

This database includes the raw data linked with the paper “ Ketogenic Diet Therapy for Epilepsy During Pregnancy and Lactation: An International Survey Exploring Clinician Perspectives and Experience” submitted on “Epilepsia Open”. The database contains responses from an online survey completed by healthcare professionals (HCPs) who work with people with epilepsy or glucose transporter type 1 deficiency syndrome (Glut1DS) of childbearing potential undergoing ketogenic diet therapy (KDT). The raw data include information on clinical experiences, counseling practices, recommendations, concerns, dietary approaches, and monitoring strategies during pregnancy and lactation. The primary aim of the survey was to collect data on the clinical use of ketogenic diet therapies during pregnancy and lactation in this population. The goal was to understand current practices, identify gaps in knowledge and safety concerns, and support future research to inform decision-making for both healthcare providers and patients.. A total of 35 HCPs reported having counseled patients about KDT use during pregnancy. Sixty percent did not recommend continuing KDT during pregnancy, mainly due to lack of clinical experience, limited safety data, and concerns about fetal development. Among the 40% who did support its use, there was no agreement on the specific KDT approach or macronutrient composition. Very few HCPs had experience providing guidance during lactation; the Low Glycemic Index Treatment and modified Atkins diet were the most commonly recommended, with universal support for ketone monitoring. Clinical experience with KDT during pregnancy and lactation remains limited and highly variable across professionals. A personalized approach with close monitoring is considered essential. The findings underscore the need for further research and the establishment of pregnancy registries to better understand the safety and efficacy of KDT in this context, enabling more informed treatment decisions.