Open to UK clinicians and healthcare providers




Thank you for interest, and for sharing your experiences with us. All survey responses are anonymised. If you decide to leave an email address to receive further information, it will not be linked with your answers.

Please contact Laura Mader at the PLRH (plrh@hermes.cam.ac.uk) with any questions or feedback.


Purpose

The aim of this research survey is to investigate the clinician/healthcare provider experience of Ketogenic Diet Therapy (KDT) as a treatment for r(20) syndrome. A similar survey has been released to investigate the experience of patients, families and carers. We are primarily interested in:


• Management strategy, including dietary recommendations, for r(20) patients
• Prescription and implementation of KDT
• Clinical monitoring and outcomes
• Barriers or challenges in maintaining the diet


The surveys will help complete an assessment of r(20) KDT use within the UK, which in turn will allow us to identify unmet needs and resources for affected families and clinicians. The survey responses will be collated and discussed at a London workshop in May 2019, with representation from Ring 20 Research & Support UK and patient families, Patient Led Research Hub, and medics and academics with a specialist interest in r(20).

Our end aim is to design a clinical trial testing the efficacy of KDT in r(20) patients.


Background

The Patient Led Research Hub (PLRH) supports research ideas as proposed by patient organisations. The PLRH is funded by the Cambridge Biomedical Research Centre (BRC) and sits within the Cambridge Clinical Trials Unit, offering a unique and unbiased network of research expertise. Ring 20 Research & Support UK approached the PLRH in June 2018 with a proposal for KDT. Thus far, we have jointly applied to the University of Cambridge Public Engagement Fund to facilitate survey distribution and workshop. We have participated in the BRC Rare Disease Day and issued a press release to raise r(20) awareness. Going forward, we anticipate a joint funding application to the National Institute for Health Research (NIHR) to support a clinical trial.

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