IMaging And Genetics In NEurodevelopment Database (IMAGINED) v1.0
Research type
Research Database
IRAS ID
348813
Contact name
Konrad Wagstyl
Contact email
Research summary
An observational-based research database of routinely collected clinical and imaging parameters to study imaging and genetics in neurodevelopmental disorders – the IMaging And Genetics In NEurodevelop
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
25/YH/0116
Date of REC Opinion
20 Jun 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
This project will create a database of children and adults with neurodevelopmental disorders of suspected or confirmed genetic origin, alongside typically developing controls.
In collaboration with partner hospitals in the UK and internationally, or directly with consenting patients and families, we will collect and anonymise the data, assigning each participant a unique study ID. Essential data will include brain MRI scans, age, and sex, along with relevant clinical information such as genetic diagnosis, seizure history, intellectual disability, and neurodevelopmental scores.
The anonymised data will be compiled by the research team at King’s College London and securely stored on the CREATE Research Data Storage System. Where necessary for analysis, parts of the database will be temporarily transferred to a secure High Performance Computing environment, accessible only to approved researchers.Research programme
When a child is diagnosed with a genetic condition that affects brain development, caused by changes to genes like SCN1A or TSC1/2, it can be difficult for doctors to explain exactly what this means for the child's future and plan effective treatments. Parents express a sense of frustration that their child has complex neurodevelopmental symptoms including seizures and intellectual disability, yet their brain MRI scan is often either described “normal”, or show changes that are not fully understood. In this project, will aim to create a database from children and adults with these neurodevelopmental diosrders. We will combine this database to with advanced computational techniques in order to: 1) detect subtle brain changes 2) link these changes to patients’ diagnoses and symptoms 3) understand how these findings could be help guide better treatments in the future The overall goal is to use this database to create translational tools to help give more accurate diagnoses, track changes over time, and choose the best treatments for children and adults with genetic brain disorders.
Research database title
An observational-based research database of routinely collected clinical and imaging parameters to study imaging and genetics in neurodevelopmental disorders – the IMaging And Genetics In NEurodevelop
Establishment organisation
King’s College London
Establishment organisation address
Room 8.11, 8th Floor Melbourne House
London
WC2B 4LL