NF1-CNC Project
The Neurofibromatosis Type 1 (NF1) Cutaneous Neurofibroma Consortium Project: Identifying genetic modifiers of disease burden to inform treatment pathways – UK Addendum
- Hospital – Speciality: Genomic medicine
- Study type: Basic science
- Funder: National Health and Medical Research Council of Australia
Summary
Neurofibromatosis type 1 (NF1) is one of the most common genetic conditions. One of the features of the condition is the development of a type of benign tumour called neurofibromas. Some people develop many neurofibromas, whilst others develop just a few. There is currently no way to predict the number of tumours someone may develop. This is an international study and overall will recruit 2000 adults with NF1 to identify if genetic variation is related to the number of tumours people develop.
Participant group
Adults with a clinical diagnosis of NF1
Participant approach
Potential participants who have previously attended clinics at MFT will be sent an invitation letter, participant information sheet and informed consent form by post. The documents advise the patient to complete the consent form and return it in the stamped addressed envelope enclosed. Contact details for the research team will be displayed clearly on the invitation letter in case potential participants wish to have a telephone conversation or ask questions about the study. If patients do not respond to the invite, they will be asked by the clinical team during their next appointment if they are interested in participating in the study.
Study open date and expected length
Opened: 1 October 2024
Expected end date: 31 May 2026
Results
Pending – this study is still active.
Contact details
Telephone number: 0161 701 9136
Email address: genetics.research@mft.nhs.uk
- IRAS number: 311500
