Brain charts in Neurofibromatosis 1
Research type
Research Study
Full title
Brain charts in Neurofibromatosis 1
IRAS ID
348949
Contact name
Shruti Garg
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
NF230043, Study reference number
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Learning problems affect nearly 80% of children with Neurofibromatosis 1 (NF1), resulting in poor school performance, limiting occupational choices, and impacting quality of life. Despite a lot of research characterizing learning impairments, our understanding of how NF1 affects brain development is limited. Doctors routinely request brain MRI scans to understand NF1-related brain changes, presence of any tumours, or to monitor the effect of treatments. Once the MRI scans are done, the images are stored digitally, often with no further use. The steady accumulation of routinely collected brain MRI data across specialist NF1 centers now provides us with an untapped resource to study brain development in NF1.
Technical advances in MRI data processing and use of advanced statistical techniques allow us to synthesize MRI data that may be collected in different centers irrespective of the differences in types of MRI scanners. This has been shown by a recent research study that combined over 100,000 brain MRIs, from over 100 different centers, to generate “brain charts” to demonstrate how the brain changes over the lifespan. Just like ‘growth-charts’ are used all over the world to monitor growth and development of children, the brain charts can provide a reference for age-related changes in the brain. In this study, we will applying a similar approach to NF1 by collaborating with 5 different centres and synthesizing up to 10,000 individual paediatric MRI scans from 6 specialist NF1 centers, to produce brain charts for NF1 through childhood and adolescence. Our joint efforts will transform our ability to understand NF1-specific patterns of brain development and maturation across the first 18 years of life and how they relate to learning outcomes.
This study is funded by the United States Depart of Defence Neurofibromatosis program.REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
24/NW/0339
Date of REC Opinion
19 Nov 2024
REC opinion
Favourable Opinion