Linking EPR and roUtine adMINistrative dAta iN paediatriC carE
Research type
Research Database
IRAS ID
334607
Contact name
NJ Sebire
Contact email
Research summary
Linking EPR and roUtine adMINistrative dAta iN paediatriC carE (LUMINANCE)
REC name
East Midlands - Derby Research Ethics Committee
REC reference
24/EM/0134
Date of REC Opinion
8 Jul 2024
REC opinion
Favourable Opinion
Data collection arrangements
The LUMINANCE database will be based on a cohort of patients treated at Great Ormond Street Hospital (GOSH) linked to external national administrative datasets collected by NHS England (NHSE), Department for Education (DfE) and Office for National Statistics (ONS).
GOSH Data: All routinely collected healthcare data from patients treated at GOSH.
NHSE Healthcare Data: Hospital Episode Statistics, a national hospital database for England including information such as Admitted Patient Care, Accident and Emergency attendances, outpatient appointments and Critical Care.
ONS data: Civil Registrations of Death details of the registration and basic demographics of the deceased person.
DfE Data: National Pupil Database which holds data on all children in state primary and secondary schools.
Establishing this database will create a resource to facilitate child health research. Only deidentified data will be used in research, and researchers would only access a subset of the data, often focussing on a patient cohort required for their specific project. A process for requesting data has been established and all requests will be scrutinised to ensure the data, items, and number of individuals is justified for the research project and does not risk disclosure of any individuals.
Research programme
The aim of this database is to develop a resource to support data analytics research in paediatrics. This database will be available to researchers at Great Ormond Street Hospital (GOSH) to support research that will: Develop new knowledge, supporting research that seeks to understand more about childhood conditions. Improve clinical practice, supporting studies that aim to improve the delivery of care. Proactive intervention, identifying situations where a child may be at risk of deterioration in their health, well-being, or education, to support the development and implementation of preventative strategies. Support children and families, giving children and carers information and tools to support them to manage their, or their child’s, medical condition. Enhance educational outcomes, supporting research that seeks to optimise the educational support children with life-long medical conditions receive, to give them the best possible educational experiences. Economic Evaluation, to support research that seeks to evaluate the economic benefit of innovative, and often expensive, new therapies for children that could have a beneficial impact on health, quality of life and educational attainment. LUMINANCE will have a governance framework to allow researchers to access this data for research within the secure Trusted Research Environment provided by GOSH.
Research database title
Linking EPR and roUtine adMINistrative dAta iN paediatriC carE (LUMINANCE)
Establishment organisation
Great Ormond Street NHS Foundation Trust
Establishment organisation address
Great Ormond Street
London
WC1N 3JH