Ketogenic Dietitians Research Network

KDRN Newsletter – May 2022

Latest News

NEXT MEETING May 9th 2022

We look forward to holding our annual general meeting at The Edwardian Hotel Manchester on May 9th from 11:00-16:00. Virtual attendance will also be available. The agenda includes committee and project updates.

May 10th The Edwardian Hotel, Manchester

Nutricia welcome us all to Manchester for KetoConference 2022 where some of our KDRN members are speaking or presenting posters.

OTHER NEWS
KDRN AGM October 2021

It was amazing for so many of our members to meet again in person in Brighton late last year before Global Keto 2021. It’s fair to say we had a lot of catching up to do! In addition, we provided updates on our existing projects (see below) and developed new working groups for exciting projects to come:

  1. KDRN resources working group
  2. Critical care consensus working group
  3. KD for adults working group

More will follow as these projects develop.

Nutricia kindly sponsored the meeting and provided an update on the following resources: KDT for the Management of infantile spasms, Ketocal 3:1 Case study booklet and My KETO Diary for Adults. Speak with your local representative for further details.

Global Keto 2021 roundup

KDRN were delighted to have a stand at Global Keto 2021, sharing the great work we do and encouraging new members to join.

KDRN members put their best foot forward with a range of posters presented. Check them out below.

New Product Launch – Vitaflo K.Vita

Many of you will be aware of the availability of K.Vita, Vitaflo’s new MCT product which can be used without the need to be on a ketogenic diet. Great Ormond Street Hospital was one of the sites involved in the tolerability trial and ketogenic dietitians from GOSH will be sharing their experience with K.Vita to KDRN members at the next meeting on 9th May.

If you have questions about K.Vita hopefully they will be answered then.

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 Vicki Whiteley)

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: Funding secured from Vitaflo and BDA GET. Plans are underway to collaborate with Dr Elles Van Der Louw in the Netherlands. Watch this space as it develops over the coming months! 

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: We have established a UK consensus group, consisting of 15 experts in the field of KDT, representing Consultant Neurologists, Ketogenic Dietitians, Clinical Biochemists and Clinical Scientists.  We will be applying for funding from ‘Nutricia Metabolics and Ketogenics Research Award’ to move the second stage of this project forward and plan to undertake a Delphi Survey following a review of recent literature. The deadline for this award has been extended until April 2022 so the project has been slightly delayed.   

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 showed that all respondents felt that virtual services would continue. It was presented at Global Keto Symposium 2021 (see poster above). A follow-up national survey of UK patients has taken place, aiming to find out what patients and carers felt about virtual dietetic appointments. The results will be presented at KetoConference 2022.

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 and will be a great resource for families and individuals. Sponsorship was secured from Matthew’s Friends and Vitaflo. A helpful animation is being produced by RedGoat Productions, watch out for the link when ready!

New Projects

Economic Evaluation of the ketogenic diet in the management of refractory epilepsy (Vicki Whiteley & Natasha Schoeler)

Project aim:

  • to undertake an economic evaluation of KD in the management of refractory epilepsy

Progress: Team have met with a health economist to map the project

Upcoming Events

KetoCollege 2022 is virtual!
Hosted by Matthew’s Friends 24th – Thursday 26th May

Check out the programme and register here.

KDRN members are delighted to support this great event as Mentors: Sue Wood, Jen Carroll, Zoe Simpson, Helena Champion. Nicole Mills, Vicki Whiteley, Tracy Cameron and Rachel Meskill.

Spotlight on New Perspectives to Manage Complex Epilepsy
Hosted by Nutricia Ketogenics on Thursday June 23rd 14:00-21:15 CET

Programme below including KDRN members Sue Wood and Jen Carroll
Register to attend here.

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, Vanessa or Tracy

Project ideas WELCOME!

Please contact us if you have any ideas for projects.