Ketogenic Dietitians Research Network

KDRN Newsletter – February 2023

Latest News

NEXT MEETING – 28th March 2023 – Virtual   

This 2-hour virtual meeting, starting at 10 am will offer support on how to write an abstract and prepare a poster for submission to conferences. Full details will be available nearer the time. Global Keto in San Diego is approaching (17-21st Sept. 2023), so we want to be ready! 

 

KDRN AGM – 12th June 2023 – In Person and Virtual

Hosted by KDRN at The Crown Plaza Stephenson Gate, Newcastle, UK

This meeting, supported by Nutricia, will be held in conjunction with KetoConference 2023 (see below)

KDRN AGM 9th May 2022 – The Edwardian Hotel Manchester
 

We had a super positive  KDRN meeting (as always!) when over 30 KDRN members met in person, with additional members joining online. Working groups shared their progress on a host of projects, including… biochemistry, the impact of COVID19 on services, improving access to KD for adults, KDRN resources, critical care consensus guidelines, a national registry, Build a Keto Meal and the health economics of the KD. See below for further updates on these projects. Elaine Gunn from the CF national registry shared her insights on the many years of planning and development underpinning the success of the CF registry.  She was one of the most engaging speakers we’ve had and has an open invitation to return! The promo video for Build a Keto meal was shared, which can be viewed and the meal planner accessed here .

Agnieszka Szmurlo shared the experiences of the dietitians at GOSH with KVita through a range of case studies and good discussion ensued. Get in touch with Natasha if you would like to be involved with real-world data collection of KVita n.schoeler@ucl.ac.uk

The presentations, resources and minutes were shared via email on 17.05.22 but get in touch with any of the committee members if you cannot access these. We look forward to our next meeting on March 28th 10-12 (virtual).

Thank you to Nutricia for sponsoring the meeting.

 

 

KetoConference 10th May 2022 – The Edwardian Hotel Manchester

Nutricia welcomed us all to Manchester for KetoConference 2022 where many of our KDRN members presented. Their presentations are hyperlinked below and stored on the Nutricia academy for viewing, you may need to register/login. 

– Ready, Steady…er, Go ! Judith Munn and Emma Gosling

KIWE: Ketogenic Dit in Infants with Epilepsy – Dr Natasha Schoeler

– Jejunal feeding and KD – Vanessa Bara

– Developing an adult ketogenic service in the UK – Rowan Sutherill

– KD in infants – our experience over the last 10 years – Victoria Whitely and Dr Ishita Desai

If you are a dietitian or dietetic support worker working in ketogenic-related clinical practice, academia or industry and are interested in joining the group, or collaborating with us, we would love to hear from you! We also offer Associate Membership for dietitians not currently practicing in ketogenic and for other healthcare professionals. Please contact us.

Project Updates

1. KD National Registry (Natasha Schoeler and Liz Neal)

Project aim:

  • To set up a prospective national database of individuals with the aim of describing the clinical and sociodemographic profiles of individuals referred for KD for epilepsy, individuals who start therapy and those who continue with KD, with the aim of developing strategies to promote equity of access to KD and long-term adherence

Progress: Thank you to all those who took part in rounds 1 and 2 of the Delphi Survey on items for inclusion in the ketogenic diet registry. The registry is now in development and we are preparing for a pilot stage. Full results of the surveys and registry pilot will be presented at the 8th Global Symposium on Ketogenic Therapies.

2. Biochemistry Project - phase 2 (Emma Cameron, Natasha Schoeler and Vicki Whiteley)

Project aim:

  • Development of a consensus resource for the interpretation and management of biochemical investigations for the assessment and monitoring of individuals with epilepsy on ketogenic diet therapy. 

Progress: This project is currently on hold whilst the team work on funding.

3. COVID-19 Survey (Vanessa Bara )

Project aim:

  • To determine changes in dietetic management of KD patients during Covid-19 pandemic 

Progress: The survey of staff and adaptations to services during the COVID-19 pandemic showing that all respondents felt that virtual services would continue was presented at Global Keto Symposium 2021. A follow-up national survey of UK patients took place last year and the results were presented at KetoConference 2022. The paper has been submitted for publication. 

4. Pictorial KD Resource (Nicole Mills and Natasha Schoeler)

Project aim:

  • To develop a pictorial resource to support individuals to undertake KD therapy 

Progress: This is now complete (Welcome to ‘BUILD A KETO MEAL’ planner!). An article was recently published in Complete Nutrition: Mills N (2002). Keto Meal Planner.  CN; 22(8): 41-42

5. Economic Evaluation of the ketogenic diet in the management of drug-resistant epilepsy (Vicki Whiteley & Natasha Schoeler)

Project aim:

  • To undertake an economic evaluation of KD in the management of drug-resistant epilepsy

Progress: The team have successfully applied to the Nutricia Metabolics and Ketogenic Research Award for project funding. Having met with a health economist they have now completed the first stage or a larger health economics project, which is a cost analysis of the KDT for drug-resistant epilepsy, with a view to publish in early 2023. Further plans include a wider feasibility study to demonstrate the health economic value of KDT through a model-based cost effectiveness analysis of KDT, compared to care as usual for children and young people with drug-resistant epilepsy.

New Projects

1. NICE to Know - Take 2 (Vicki Whiteley)

Project aim:

  • To review ketogenic diet services across the UK and Ireland and gain baseline data with a view to assess the impact of recent changes to the NICE guidelines in 2022.

Progress: Data was gathered using an online survey via KDRN and KETOPAG. Other centres who previously submitted data were also contacted. All the data has now been collected and now will be analysed and submitted for publication within the next few months

2. Critical Care Consensus Group (Isobel Hardy)

Project aim:

  • To create international clinical practice guidelines for commencing ketogenic diets for the management of epilepsy in the critical care setting.

Progress: The team have been granted funding by Matthew’s Friends to progress this project. They are currently collating current hospital guidelines and reviewing published literature on this topic with a view to look at similarities and differences in practice and highlight any potential gaps.

If you or any of your ketogenic colleagues would be interested in being included in either the initial working group, or the wider review group, please do contact me – Isobel.hardy@gosh.nhs.uk.

Publications

Upcoming Events

Future Webinars:  Matthew’s Friends hope to host more free webinars later in the year. The e-learning platform  will provide links to all of their previous free webinars. Currently available to view are:
1) Ketogenic Tube Feeding webinar
2) Glut 1 Deficiency webinar
 
Webinar: Weaning from the Ketogenic Diet 
Hosted by Matthew’s Friends Netherlands/Flaunders Friday 17th March 2023

Online GMT 12:00-15:00 (CET 13:00-16:00) – This event will include a presentation from Eric Kossoff and break out groups for discussion of case studies in weaning from the ketogenic diet in teenagers or infants.  

 REGISTER HERE 

 

 
 
FREE WEBINARMeet the Global Experts in Epilepsy 
 Hosted by Matthew’s Friends in conjunction with Nutricia 29th March 2023

This hybrid event will be held in Utrecht, Netherlands, and available online from 13:50-16:20 GMT (14:50-17:20 CET). It includes an introduction to INKS, prediction models of efficacy of KD and use of AED during all phases of KD. Face to face attendees will be able to discuss clinical cases over dinner.  Email niamh.brannelly@danone.com to register you interest

KetoCollege 2023
Hosted by Matthew’s Friends

KetoCollege has moved online and is now accessible 24/7 via their e-learning platform https://elearning.This replaces both KetoCollege and their previous introductory videos, and enables training on demand for professionals globally. 

NEW: KetoCollege Advance 2023

Hosted by Matthew’s Friends on Tuesday 23rd and Wednesday 24th May (in person)

Registration opens 1 Feb 2023, see KetoCollege Advance – Matthew’s Friends KetoCollege for more information

KetoCollege Advance is a step on from KetoCollege (which has moved to their online e-learning platform) and is aimed at experienced keto teams or those who have completed the basic KetoCollege programme.  The programme will change from year to year.

Many of our KDRN members will be presenting or leading workshops. Topics for this year include Biochemistry and Dietary Management; Tube Feeding, Blended Feeds and Parenteral Feeds; Dietetic Assistant Workshop; and the opportunity to discuss challenging case studies.  

 NEW: Keto Education Day 2023

Hosted by Matthew’s Friends on Thursday 25th May (in person)

A Keto Education Day for families, new patients, interested parties and allied health professionals. Topics cover the whole ketogenic journey from preparation, initiation, daily management to weaning from the diet. Members from KDRN are included in those presenting.

KetoConference 2023

KetoConference 2023

Hosted by Nutricia 13th June 2023 The Crown Plaza Stephenson Gate, Newcastle, UK
Look out for more information coming soon. In previous years there has been a call for abstracts for presentations so consider any audits, service improvement or research projects that you have been doing and share your hard work with us.
 
 
KetoGlobal 2023 – 8th Global Symposium on Ketogenic Therapies
Hosted by INKS 17th – 21st September 2023, Loes Coronado Bay Resort, San Diego, USA
The full agenda and date for submission of abstracts not released yet. See https://globalketo.com/ for more information.

Volunteers Welcome!

Please contact us if you would like to get involved with any of our projects. Collaborations are invaluable for gaining research experience and building relationships with other KD centres.

KDRN Twitter & Website

KDRN has joined the Twitterati!

@KDRN_online

Goal: To shout about the great work of KDRN! Social media policy agreed at November meeting. All posted content should reflect KDRN’s vision and values. 

Administrators: Jen Carroll, Vicki Whitely & Emma Gosling 

GET INVOLVED by following and retweeting

Website Update

We hope you like our new look  newsletters! 

We want to shout about all the great work our KDRN members undertake so please share any updates, conference attendance, presentations, resources etc. Remember to take a picture of you with your poster and send to us! 

Administrators: Hannah Taylor & Jen Carroll

GET INVOVLED by sending content or ideas to Hannah, Jen, Tracy or Vanessa

Project ideas WELCOME!

Please contact us if you have any ideas for projects.