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.
![](/images/common/UONArtboard-1.png)
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.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/quino-al-rK_nz3DswX4-unsplash_370x280_800_600_s_c1.jpg)
Laura’s NF1 story
Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/queen-mary-logo_370x280_800_600_s_c1.jpg)
Disfigurement equality at work - research
This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements
Read More![](https://nervetumours.org.uk/images/made/images/common/Comedy_night_370x280_800_600_s_c1.jpg)
RAISING THE ROOF: CHARITY COMEDY NIGHT IN AID OF NERVE TUMOURS UK
Join us in London on our first comedy night to celebrate 40 years of Nerve Tumours UK
Read More![](https://nervetumours.org.uk/images/made/images/common/robina-weermeijer-3KGF9R_0oHs-unsplash_370x280_800_600_s_c1.jpg)
NF1 stem cell research study
Julieta is carrying out stem cell research to understand brain development in those with NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/FB_IMG_1646043328094_370x280_800_600_s_c1.jpg)
Ava-Lily’s NF1 story
Ava-Lily is thriving at school despite various NF1 related difficulties - read her story
Read More![](https://nervetumours.org.uk/images/made/images/common/image_(12)_370x280_800_600_s_c1.jpg)
Westminster Virtual Rare Disease Day 2022 Reception
NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_supports_RDD_370x280_800_600_s_c1.jpg)
Rare Disease Day 2022
Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_7612_370x280_800_600_s_c1.jpg)
Runderpants Winchester 2022
The Runderpants fun run makes a successful return to Winchester
Read More![](https://nervetumours.org.uk/images/made/images/common/fruit_fly_370x280_800_600_s_c1.jpg)
NF1 Research study with fly model
How can studying the brain of a fruit fly help with understanding of NF1?
Read More