LifeArc’s £40m research centres to boost research into rare diseases

Clinical research

Four new LifeArc Translational Centres for Rare Diseases have been created to give people living with rare medical conditions access to improved tests and treatments.

The virtual centres will focus on areas where there are significant unmet needs. They aim to tackle barriers that ordinarily prevent new tests and treatments reaching patients with rare diseases and speed up the delivery of rare disease treatment trials.

The centres will bring together scientists and rare disease clinical specialists from across the UK; encouraging new collaborations across different research disciplines and providing improved access to facilities and training.

Globally, there are more than 300 million people living with rare diseases. However, rare disease research can be fragmented.

Dr Catriona Crombie, Head of Rare Disease at LifeArc, says: “We’re extremely proud to be launching four new LifeArc Translational Centres for Rare Diseases. Each centre has been awarded funding because it holds real promise for delivering change for people living with rare diseases. These centres also have the potential to create a blueprint for accelerating improvements across other disease areas, including common diseases.”

The new research centres

The LifeArc Centre for Rare Respiratory Diseases will be led by Professor Kev Dhaliwal, Professor of Healthcare Technology at the University of Edinburgh, Institute for Regeneration and Repair. The Centre is a partnership between Universities and NHS Trusts across the UK, co-led by Edinburgh with Nottingham, Dundee, Cambridge, Southampton, University College London. The £9.4 ($11.7) million centre will create a UK-wide biobank of patient samples and models of disease.

The LifeArc-Kidney Research UK Centre for Rare Kidney Diseases is being launched in partnership with co-funder Kidney Research UK and will be led by Dr Louise Oni, Senior Lecturer in Paediatric Nephrology at the University of Liverpool. The new £9.4 ($11.7) million centre will build on strong established resources, including the national registry of rare kidney diseases (RaDaR), the national renal sample biobank (NURTuRE) and care guidelines.

The LifeArc Centre for Rare Mitochondrial Diseases is a national partnership with the Lily Foundation and Muscular Dystrophy UK. It will be led by Professor Patrick Chinnery, Professor of Neurology at the University of Cambridge, and key partners at University College London, Newcastle University and three other centres (Oxford, Birmingham and Manchester). The £7.5 ($9.3) million centre will establish a national platform that will connect patient groups, knowledge and infrastructure.

The LifeArc Centre for Acceleration of Rare Disease Trials brings together a consortium of three universities from across the UK, Newcastle University, Queens University Belfast, and University of Birmingham, coordinated by Professor David Jones, Professor of Liver Immunology at Newcastle University. The £12 ($15) million centre will develop a UK ‘four nations’ approach to deliver trials of new treatments. The research team will create a rare disease trial recruitment portal and will design and deliver trials in partnership with patients.

Diana Spencer, Senior Digital Content Editor, DDW

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