Omar Pathmanaban, Clare Goddard

Patient-led charity supports research into rare and incurable genetic condition

A new transatlantic partnership will support research aiming to find an effective treatment for a rare genetic condition.

Neurofibromatosis type 2 (NF2) affects around one in 30,000 people in their lifetime and causes tumours to grow along nerves, causing deafness, vision loss and loss of mobility.

Now researchers at the recently launched Geoffrey Jefferson Brain Research Centre have agreed a partnership with the patient-led charity NF2 BioSolutions UK & Europe, the UK arm of the global NF2 BioSolutions organisation, to support studies into the role of inflammation in the growth of tumours. The Brain Research Centre is a partnership between the Northern Care Alliance NHS Group (which brings together Salford Royal NHS Foundation Trust and The Pennine Acute Hospitals NHS Trust) and The University of Manchester, working in partnership with Manchester Cancer Research Centre, The Christie NHS Foundation Trust and Royal Manchester Children’s Hospital (part of Manchester University NHS Foundation Trust (MFT)).

It’s hoped that the research programme will lead to repurposing existing anti-inflammatory and immune-modulating drugs to benefit patients with the currently incurable condition. Such drugs are widely used in conditions such as multiple sclerosis and rheumatoid arthritis.


The work will contribute to Manchester’s existing world-leading NF2 tumour research programme, which has already identified the central role of inflammation in the microenvironment of schwannoma (a tumour of the tissue that covers nerves, called the nerve sheath) and meningioma (a tumour that forms on membranes that cover the brain and spinal cord just inside the skull) in NF2.  Manchester is one of four UK centres specialising in NF2, with the service led by Professor Gareth Evans – Professor in Medical Genetics and Cancer Epidemiology at MFT’s Saint Mary’s Hospital, and Cancer Prevention and Early Detection Theme Lead for the NIHR Manchester Biomedical Research Centre (BRC)  – and surgery to remove tumours taking place at Salford Royal NHS Foundation Trust.

The new partnership is led by Mr Omar Pathmanaban (pictured), who is a Consultant Neurosurgeon at Manchester Centre for Clinical Neurosciences at Salford Royal, Honorary Senior Lecturer at The University of Manchester and Strategic Development Lead of the Geoffrey Jefferson Brain Research Centre. He said: “I am delighted that NF2 BioSolutions and NF2 BioSolutions UK & Europe will be working with us to understand the inflammation and immunology of NF2 schwannoma and meningioma tumours with a view to identifying new treatments, including repurposing of existing drugs currently used in other conditions.

“Children and adults with NF2 urgently need new treatments to prevent or reverse serious harm caused by these tumours, such as deafness, visual loss and paralysis and to limit the number of surgical procedures they need over a lifetime.

“It is also very exciting that we will be training the next generation of world class NF2 scientists through this scheme, amplifying the benefit of our partnership into the future.”


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Professor David Brough, a leading scientist in brain inflammation and immunology at The University of Manchester and Co-Principal Investigator with Mr Pathmanaban on the NF2 BioSolutions PhD Studentship grants, said: “This is an exciting opportunity to develop further understanding of NF2 and how the immune system contributes. There is potential to make discoveries that we can rapidly translate to the clinic.”

Geoffrey Jefferson Brain Research Centre Joint Director Professor Andrew King said: “NF2 tends to get worse over time and those affected face having surgery repeatedly to remove tumours. Both the treatment and the underlying tumours often lead to neurological disability, most notably hearing loss, but can be much more severe. It’s not uncommon for disability to increase over time as a result of multiple tumours in the brain and spine and the surgery on them.

“We know that inflammation is a key factor in tumour growth in NF2 and believe that we can target that to develop treatments.


“This programme will build on the expertise we already have in inflammation and immunology research at the Lydia Becker Institute at The University of Manchester, and on our work in the Geoffrey Jefferson Brain Research Centre to understand fundamental mechanisms of inflammation and how they contribute to brain disease.”

Manchester is already home to five of the top 20 cited researchers in NF2 worldwide, including Professor Evans (the most cited author internationally) who is a global authority in the field and leads the NF2 highly specialised service in England. He said: “This is a fantastic opportunity to build on Manchester’s expertise to develop life enhancing treatments for NF2 and train future leaders in the field.”

NF2 BioSolutions UK & Europe is a patient-led, registered charity and arm of the global NF2 BioSolutions organisation.  Its objectives are to relieve sickness and support preservation and protection of health by advancing research into a cure or preventative treatment for NF2.

NF2 BioSolutions UK & Europe Chief Executive Officer Clare Goddard (pictured), whose daughter and son have NF2, said “We are delighted to be entering into this partnership that offers hope for people with NF2. The condition causes deafness, blindness and eventually loss of all senses and mobility. With this work in the UK and through our gene therapy labs in the US we are excited to share data and advance treatments. This is a strong step towards our solution.”

The initial three-year programme will begin in September 2021.

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