De Giorgis, ValentinaPasca, LudovicaAznar Laín, GemmaBibic, IrenaBibic, VedranaDarra, FrancescaDianin, AliceDressler, AnastasiaJonsson, HennaKomulainen-Ebrahim, JonnaKverneland, MagnhildMolteberg, EllenRagona, FrancescaDe Saint-Martin, AnneVaresio, CostanzaCross, J. HelenERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG)2025-04-242025-04-242024De Giorgis V, Pasca L, Aznar-Lain G, Bibic I, Bibic V, Darra F, et al. Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey. Epilepsia Open. 2024 Aug;9(4):1582-8. DOI: 10.1002/epi4.129682470-9239http://hdl.handle.net/10230/70186The implementation and potential of ketogenic dietary therapies (KDTs) have changed over time. The organization of KDT services, the availability of multidisciplinary teams, resources and support for patients and families still vary widely around the world. This diversity is reflected by a lack of consistency in reported outcomes, optimization of using KDT and KDT compliance. To highlight the unmet needs for KDT services, the ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG) conducted an online survey on KDT implementation and utilization, addressing the following topics: Use and completeness of guidelines and protocols; assessment of compliance and outcome parameters, sustainability and inclusivity in daily life. Consistently reported unmet needs included the lack of psychological support and resources to measure and improve adherence to KDT, the lack of inclusion strategies, and shared guidelines and protocols adapting to specific needs. Future interventions should focus primarily on educational and informative measures together with creation of shared protocols for complex care. PLAIN LANGUAGE SUMMARY: This study provides the results of a survey compiled by clinicians and patients representatives belonging to ERN Epicare, designed to unravel unmet needs from both patients' and healthcare practitioners' perspectives during ketogenic dietary therapies (KDT) provision. Importantly, results show the need to create new shared protocols and guidelines meant for KDT use in complex care situations and to develop future strategies initiatives to support patients improving their social inclusivity.application/pdfeng© 2024 The Author(s). Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.info:eu-repo/semantics/articlehttp://dx.doi.org/10.1002/epi4.12968ERN‐EpiCAREEpilepsyKetogenic dietary therapiesPatient centered outcomesUnmet needsinfo:eu-repo/semantics/openAccess