Bilateral vestibular schwannomas are a hallmark of NF2 and result in progressive hearing loss, typically in early adulthood. Treatment options remain limited and historically most patients with NF2 experience complete hearing loss from tumour progression or after treatment with surgery or radiation.

Research into developing new treatments is challenging due to difficulty in finding cases and a lack of research funding and attention. We’re establishing a NF2 registry to collect information on patients with NF2 associated vestibular schwannomas and other CNS tumours and to create a novel registry clinical trial evaluating the use of Bevacizumab in Australian patients. 

This web-based application is designed for the collection and management of information related to clinicopathological details, treatment, and outcome for patients with NF2 associated tumours. 

The registry will provide a framework to conduct prospective clinical trials, whilst providing ‘real-world’ information on treatment and endpoints in the management of NF2 associated CNS tumours. 

Our approach will bring the consumer and clinical community together in identifying novel treatments and approaches for patients with NF2. We look forward to discussing the program and identifying collaborators to join this registry.