Women with epilepsy sometimes use ketogenic diets (high-fat, low-carb eating plans) to help control seizures, especially during pregnancy when they want to reduce seizure medications. However, doctors don’t have enough information about whether these diets are safe for pregnant women and their babies. International epilepsy experts have created a standardized checklist of questions that pregnancy registries around the world can use to collect consistent information about women using ketogenic diets during pregnancy and breastfeeding. This organized approach will help doctors gather reliable data to answer important safety questions and give better advice to women with epilepsy who are planning pregnancies.
The Quick Take
- What they studied: How to create a standard way to collect information about women with epilepsy who use ketogenic diets during pregnancy and breastfeeding
- Who participated: International epilepsy experts and members of the International League Against Epilepsy Ketogenic Dietary Treatments Task Force who reviewed existing pregnancy registries and medical literature
- Key finding: Experts developed the first standardized dataset of questions to track ketogenic diet use, pregnancy outcomes, and breastfeeding results in women with epilepsy across multiple countries
- What it means for you: If you’re a woman with epilepsy considering a ketogenic diet during pregnancy, doctors will soon have better tools to give you evidence-based advice about safety. This doesn’t tell us the diet is safe or unsafe yet—it’s a plan to collect that information systematically.
The Research Details
This is not a traditional research study testing a treatment. Instead, international epilepsy experts used a structured consensus process—similar to a formal discussion where experts agree on best practices—to develop standardized questions for pregnancy registries. These registries are databases where doctors record information about pregnant women with epilepsy and their outcomes. The experts reviewed existing pregnancy registries that have tracked seizure medications for 25 years and identified what information is missing about ketogenic diets. They then created a core dataset (a standardized set of questions) that can be added to these registries worldwide.
The process involved multiple rounds of expert input to ensure the questions would capture important information about diet type, how long women used the diet, what happened during pregnancy and birth, and breastfeeding outcomes. This approach is practical because it uses existing systems rather than creating entirely new ones.
For 25 years, international pregnancy registries have successfully collected safety data about seizure medications, helping doctors understand risks to babies. However, no similar organized system exists for ketogenic diets. Without standardized data collection, information about ketogenic diet safety remains scattered in individual case reports rather than aggregated into reliable evidence. This standardized approach will transform isolated stories into organized, high-quality data that doctors can trust when counseling women.
This is a consensus-based framework developed by recognized international experts, not a study with experimental results. Its value depends on whether registries actually adopt these standardized questions and how completely they collect the data. The strength of future evidence will depend on participation from pregnancy registries worldwide and the quality of data they contribute.
What the Results Show
The International League Against Epilepsy Task Force created the first standardized core dataset specifically designed to capture ketogenic diet exposure during pregnancy and lactation. This dataset includes standardized questions about which type of ketogenic diet was used (such as classical ketogenic diet, modified Atkins diet, or medium-chain triglyceride diet), how long the woman followed the diet, when she started and stopped, and any changes to seizure medications during this time.
The dataset also captures important maternal outcomes like whether the mother experienced side effects, changes in seizure frequency, weight changes, and any medical complications during pregnancy. For the baby, it tracks birth outcomes, birth weight, any birth defects, developmental milestones, and health status after birth. For breastfeeding, it documents whether the mother breastfed, any challenges, and the baby’s feeding outcomes.
This standardized framework is designed to be practical and fit into existing pregnancy registries without requiring major changes to current systems. The goal is to harmonize data collection across multiple international registries so that information can be combined and analyzed together, creating a much larger and more reliable evidence base than currently exists.
The consensus process identified that current pregnancy registries have successfully tracked seizure medication safety for decades, demonstrating that systematic data collection works. The experts recognized that ketogenic diets may offer advantages during pregnancy because they might allow women to reduce seizure medications, potentially lowering drug exposure to the baby. However, they also noted that doctors are hesitant to recommend these diets during pregnancy because safety information is limited. The standardized dataset addresses this gap by creating a mechanism to collect the missing information.
This work builds on 25 years of successful pregnancy registry data collection for seizure medications. Those registries have provided robust evidence about which medications are safer during pregnancy, helping doctors make informed recommendations. This new initiative applies the same successful approach to ketogenic diets, which are increasingly used but have never been systematically tracked in pregnancy registries. It represents the first coordinated international effort to standardize data collection for dietary treatments in pregnancy.
This is a framework and call to action, not a study with results about safety. It doesn’t provide information about whether ketogenic diets are actually safe during pregnancy—it’s a plan to collect that information. The actual usefulness depends on whether pregnancy registries around the world adopt these questions and how thoroughly they collect data. Some registries may not participate, and data quality may vary. Additionally, this framework is just being introduced, so no data has been collected yet using these standardized questions.
The Bottom Line
Healthcare providers should consider adopting these standardized questions in pregnancy registries to systematically collect data on ketogenic diet use during pregnancy. Women with epilepsy considering ketogenic diets during pregnancy should discuss this with their neurologist and obstetrician, understanding that while some data exists, comprehensive safety information is still being gathered. Current evidence is limited, so decisions should be individualized based on seizure control needs and other factors. (Confidence: This is a framework recommendation, not a treatment recommendation.)
Women with epilepsy of childbearing age who are considering ketogenic diets, especially those planning pregnancy or currently pregnant, should care about this initiative. Neurologists and obstetricians who counsel women with epilepsy need this standardized data. Healthcare systems and pregnancy registries should implement these standardized questions. Women should NOT assume ketogenic diets are definitely safe or unsafe during pregnancy based on this paper—it’s a plan to gather that information.
This is a framework being introduced now. It will take time for registries to adopt the standardized questions, collect data from pregnant women, and accumulate enough cases to draw reliable conclusions. Meaningful safety data will likely take several years to accumulate as registries prospectively collect information from women using ketogenic diets during pregnancy.
Want to Apply This Research?
- If you’re a woman with epilepsy using or considering a ketogenic diet during pregnancy, track your seizure frequency (number of seizures per week), diet adherence (days per week following the diet), any medication changes, and any side effects experienced. Record this weekly to share with your healthcare team.
- Use the app to log your ketogenic diet type, meals, and adherence level daily. Set reminders for medication doses and seizure tracking. Create a summary report monthly to discuss with your neurologist, helping ensure your care team has complete information about your diet and seizure control.
- Establish a baseline of your seizure patterns before starting a ketogenic diet. Continue tracking seizures, diet adherence, and any side effects throughout pregnancy and breastfeeding. Share monthly summaries with your healthcare providers to monitor safety and effectiveness. This personal tracking complements the larger registry data collection efforts.
This article describes a framework for data collection, not a study proving ketogenic diets are safe or unsafe during pregnancy. Women with epilepsy should NOT start, stop, or change ketogenic diets or seizure medications without consulting their neurologist and obstetrician. Seizure control during pregnancy is critical for both mother and baby safety. All decisions about diet and medication during pregnancy should be made with qualified healthcare providers who know your complete medical history. This information is educational and does not replace professional medical advice.
This research translation is published by Gram Research, the science division of Gram, an AI-powered nutrition tracking app.