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Neurofibromatosis Type 1 Severity Scale

Who: Murdoch Children’s Research Institute and The Royal Children’s Hospital

Where: Melbourne

About:

This study tool was developed by Dr Stacie Wang, the first Barney NF Fellow, and resulted in the development of an overall scale to help provide a succinct measure of NF1. 

This will be beneficial to facilitate optimal clinical care, clinical communication between specialties, as well as being extremely useful in clinical trial and research about NF1.

If you currently attend the Royal Children’s Hospital NF Clinic in Melbourne you may be approached at your next clinic appointment to participate in this study.


Funded projects

Tint: Mek Inhibitor trial
New Gene Editing Technology (CRISPR)
Neurofibromatosis Type 1 Severity Scale
Children with NF1 & Auditory Processing Deficits + Speech Perception Problems
Predicators of Autism in NF1: Development in Adolescence (PANDA)
Documenting and characterising the various MRI brain changes
Cell-free Bio bank