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Researching NF1

10 October 2019

Researching NF1

Rory Deasy has conducted research into the treatment of children with NF1. Here he talks about his research journey.

I got into the research as part of my undergraduate degree in medicine. I did a dissertation with Professor Walker's team looking into the use of chemotherapy/radiotherapy/observation as a line of treatment in paediatric patients with NF1 that had optic pathway gliomas.

Professor Walker is one of the UK’s leading experts in children’s brain tumours, and is co-director of the Children’s Brain Tumour Research Centre at the University of Nottingham.

In my research, MRI images and visual acuity as well as demographics of the patient were sent out to a panel of experts to obtain a consensus decision on best line of treatment. 

The research has acted as a foundation that has been built on to assist with treatment decisions within the SIOPE community.

I recently have been back to visit the Nottingham team at Queen's Medical Centre and they are continuing their research into the treatment of children with NF1 and NF2.

Optic pathway glioma (OPG)  are tumours that arise from the glial cells in the central nervous system. They form anywhere on the optic pathway but are commonest in the optic nerves in NF1. Most tumours are indolent and do not need treatment but some cause decreased vision in childhood and require chemotherapy.

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