The UK’s research landscape is set for a £14m boost as the sector moves to tackle barriers in the diagnosis, management and treatment of rare diseases.
The investment will be funnelled into a new UK Rare Disease Research Platform which will bring together experts from all levels in the sector to deliver better research results that make a greater impact.
The platform will comprise of a central operating hub and 11 specialist nodes based at universities up and down the UK.
We’re co-funding a new UK Rare Disease Research Platform with @NIHRresearch that will bring together expertise across academic, clinical and industry research, to improve and accelerate our understanding and treatment of rare diseases: https://t.co/gUJxZ8TApC pic.twitter.com/2R3rrxmuIH
— Medical Research Council (@The_MRC) July 5, 2023
These include:
- A node investigating the epigenomics of rare diseases – led by the University of Exeter and the University of Manchester
- A node seeking to gain a greater understanding of rare diseases that share hyperactivation of the mTOR pathway as a common underlying molecular mechanism – led by King’s College London
- A node known as CAPTIVATE looking at how clinical practice can be shaped through innovative trial designs – led by the University of Birmingham
- A node for histiocytic disorders – led by Newcastle University and the University of Nottingham
- A lipidomic and metabolomic node – led by Swansea University
- A node exploring the ethical, legal and social issues in rare conditions research – led by the University of Manchester
- A node for the early assessment, diagnosis and treatment of Parkinson’s and related syndromes – led by University College London
- A node for rare early onset lower urinary tract disorders – led by the University of Manchester
- A node for the renal ciliopathies national network – led by Newcastle University
- A node analysing cardiovascular rare disease – led by Imperial College London
- A node seeking to establish a national platform for the development of nucleic acid therapy for rare diseases – led by University College London
The platform will be jointly funded by the Medical Research Council and the National Institute for Health and Care Research (NIHR), and will act as a point of entry for industry and international collaborators.
“The platform will enable greater collaboration between patients and those working across academic, clinical and industry research,” said the NIHR’s chief executive, Professor Lucy Chappell. “By bringing the right people and expertise together, we will be able to provide better care more quickly to those living with rare diseases.”
Image credit: iStock
