Ketogenic diet registry for epilepsy: A cross-sectional feasibility study

Area of Science:

• Neurology
• Clinical Research Methodology
• Dietary Interventions

Background:

• The ketogenic diet is a recognized treatment for refractory epilepsy.
• A need exists for a centralized registry to facilitate research on ketogenic dietary therapy (KDT) outcomes.
• Understanding long-term clinical and safety profiles of KDT is crucial for optimizing patient selection and care.

Purpose of the Study:

• To develop and assess the feasibility of implementing the Keto-Reg registry for individuals undergoing KDT.
• To establish a platform for collaborative research on KDT in epilepsy.
• To identify optimal candidates for KDT through data-driven insights.

Main Methods:

• International Delphi survey of KDT healthcare professionals to determine registry data items.
• Implementation of an electronic registry platform across multiple European KDT centers.
• Feasibility and acceptability assessment through questionnaires and data validation against medical records.
• Qualitative interviews and surveys with patients and parents regarding a potential patient/family registry section.

Main Results:

• 70 data items reached consensus via the Delphi survey.
• Registry data entry demonstrated high accuracy (0.3% errors) and was deemed feasible and acceptable short-term.
• Lack of dedicated time is the primary barrier to long-term implementation; funded hours are necessary.
• A patient/family registry section is viewed positively and as feasible by the majority of stakeholders.

Conclusions:

• Healthcare professional involvement in the Keto-Reg registry is feasible in the short term.
• The next stage requires prospective, longitudinal data collection from a larger, international cohort.
• Keto-Reg has the potential to significantly advance research into KDT for epilepsy management.