https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/support-researchers/brc-opportunities/previous-awards-from-the-nihr-gosh-brc/applied-child-health-informatics-awards/
Applied child health informatics awards
Applied child health informatics builds on the potential of data science to revolutionise medicine. The infrastructure in GOSH Digital Research Informatics and Virtual Environments (DRIVE) supporting this theme, is world-leading.
This new theme will improve personalised health care decision-making, based on data-derived evidence at scale in a continuously optimised research data environment. It will leverage legacy, genomic and Electronic Patient Record data to improve patients’ health by applying Artificial Intelligence and machine learning (under strict rules and principles).
International registry of ketogenic diet therapy for individuals with drug-resistant epilepsy - Patient and Public Involvement and Engagement work ahead of a patient/parent/carer section to the registry.
Awarded to Natasha Schoeler for £1,988 as part of the new projects call. Also under the PPIE theme.
Ketogenic diets are low-fat, high-carbohydrate diets used as a treatment for children with epilepsy who continue to have seizures (‘fits’) despite trying anti-seizure medicines. These diets have been shown to be effective in high-quality studies. However, there are still some questions that remain unanswered, such as ‘are there any rare side effects from following a ketogenic diet?’ or ‘can people continue to benefit from ketogenic diets even after they stop the diet?’. As the number of children with epilepsy who are following a ketogenic diet within each specialist centre, or even within each country, is small, these questions are best answered by combining information from lots of different places.
An international database is being set up at UCL GOSH ICH to collect information on people with epilepsy referred to start a ketogenic diet. This information will be entered by healthcare professionals that are part of the ketogenic team in each centre, and they will include basic details, such as age and gender, details about their epilepsy and ketogenic diet, and whether they experienced any positive or negative changes from following the diet.
We would also like to collect information from patients with epilepsy who have been referred for a ketogenic diet, or from their parents or carers. We would like to speak to these individuals about whether they would be happy to enter information into such a database and, if so, what information they would be happy to share and how often.
Catalyst Fellowship 2023
Project: How do ciliary genes contribute to the aetiology of congenital hypopituitarism and related disorders?
Awarded to Louise Gregory.
Also part of the Career Development Academy.