Keto-Reg: A registry of children and young people with epilepsy referred for ketogenic diet therapy
The principal purpose of 'Keto Reg' is to determine long-term clinical and safety outcomes and identify the most suitable candidates for ketogenic diet therapy.
What is Keto-Reg?
Keto-Reg is a registry (online database) to collect information on children and young people with epilepsy referred for ketogenic diet therapy. We are working in collaboration with NHS ketogenic services, as well as ketogenic centres from around the world to answer specific research questions. We hope that the registry will allow us to find out more about how well ketogenic diets work for different epilepsies, their long-term effects and how best to provide patient care.
The results of our cross-sectional feasibility study are published here.
We have started the next stage of the registry, a longitudinal feasibility study, in collaboration with 22 ketogenic centres from around the world. This is supported principally by the Anton Schär Foundation, as well as by Matthew’s Friends charity and Vitaflo Ltd. As part of this study, we are exploring biomarkers of response to ketogenic diet therapy, in collaboration with Prof Kevin Mills and team at UCL’s Biological Mass Spectrometry Centre.
If you wish to be involved in the registry in the future, please email Dr Natasha Schoeler on n.schoeler@ucl.ac.uk.
Research Team
The Chief Investigator of this study is Dr Natasha Schoeler (Senior Research Fellow and Principal Paediatric Ketogenic Dietitian).
The core research team is:
Dr Liz Neal (Research Dietitian, UCL GOS ICH)
Victoria Whiteley (Advanced Clinical Practitioner in Ketogenic Therapies, Royal Manchester Children’s Hospital)
Dr Elles van der Louw (Postdoctoral Ketogenic Dietitian, Erasmus University Medical Center).
This study is facilitated by the Ketogenic Dietitians Research Network www.kdrn.co.uk.
The study sponsor is Great Ormond Street Hospital for Children.
We are grateful to be supported by our study sponsors:
Anton Schär Foundation (principal funder)
Vitaflo Ltd
Matthew’s Friends.
All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
