Southampton researchers will co-lead a new £9.4 million centre to improve care for people with rare lung diseases.
The research centre will speed up diagnosis and treatment of rare respiratory diseases. Thousands of people around the world could benefit from the new collaboration.
The LifeArc Centre for Rare Respiratory Diseases is a partnership between Universities and NHS Trusts. It is co-led by Southampton with partners in Edinburgh, Nottingham, Dundee, Cambridge, and at University College London. It is supported by six other clinical partners across the UK.
Collectively common
A rare disease is one that affects fewer than 1 in 2,000 people.
Over 300 million people are living with rare diseases worldwide. Of those, one in 20 are related to respiratory conditions. While rare on their own, collectively they create significant social and economic costs.
The collaboration will create a UK-wide bank of anonymised tissue samples and models of disease. This will enable researchers to advance pioneering therapies.
Scientists hope to lower the risk of investment for research in this area and boost public awareness.
The research centre is co-led by Professor Jane Lucas at the University of Southampton. She is part of the NIHR Southampton Biomedical Research Centre.
Prof Lucas leads the national primary ciliary dyskinesia (PCD) diagnostic centre in Southampton. PCD is a rare, inherited condition that leads to chronic lung, ear and sinus infections. Prof Lucas said:
“The LifeArc centre provides an exciting opportunity to advance new therapies for people with rare lung diseases. The collaboration between UK institutions will speed up delivery of novel therapies for clinical trials.
“In Southampton, we will lead the development of high throughput pre-clinical models to assess effectiveness of treatments for primary ciliary dyskinesia.
“We will work with patient organisations and academic collaborators to develop the infrastructure, including biobanks, registries and scientific expertise. This will ensure the Life Arc Centre is the ‘go to’ place for developing new treatments.”
Working in collaboration
The centre is funded by LifeArc, a not-for-profit medical research charity.
It is supported by several patient groups. These include Action for Pulmonary Fibrosis, Childhood Interstitial Lung Disease, LAM Action, PCD Research and PCD Support UK.
Professor Kev Dhaliwal from the University of Edinburgh is leading the new centre. He said:
“Patients and their families are at the heart of our centre. By bringing together the four UK nations’ community of researchers, patient groups, clinical experts, NHS trusts and by coalescing industry, investors and wonderful colleagues around the world, we are sharing resources and committed to developing new therapies for everyone afflicted with rare lung disease.
“We are very grateful to LifeArc for supporting the centre on our journey of collaboration across the UK with a mission and purpose to innovate and translate for patient benefit.”
‘New and significant hope’
Former BBC News journalist and presenter, Philippa Thomas, has a rare incurable condition that damages the lungs.
Philippa’s condition has stabilised but for many people, the disease can be severely life-limiting. Philippa explains:
“There is so little research funding for rare respiratory diseases. Getting treatment - let alone an accurate diagnosis - really does feel like a lottery. It is also terrifying being diagnosed with something your GP will never have heard of.
“I am overjoyed at the prospect of a new LifeArc centre for Rare Respiratory Diseases. It represents new and significant hope for patients and their families. Hope that we can speed up and bring together the provision of essential information, access to specialised care, new clinical trials, and above all a future with a cure.”
This centre is one of four new LifeArc Translational Centres for Rare Diseases. They have been set up to address unmet needs.
Dr Catriona Crombie, Head of Rare Disease at LifeArc, said:
“Each centre has been awarded funding because it holds real promise for delivering change. These centres also have the potential to create a blueprint for accelerating improvements across other disease areas.”
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