Dr Catriona Crombie
Head of Rare Diseases, LifeArc
Four new research centres are set to unite scientists and specialists across the country to develop new tests and treatments for patients with rare diseases.
For patients with rare diseases to benefit quickly from new treatments, researchers and scientists from various disciplines and facilities must collaborate more closely.
Rare disease research requires collaboration
Unfortunately, the field of rare disease research can often be fragmented. Self-funded, medical research charity LifeArc points out that scientists can lack access to specialist facilities, advice on regulation, trial designs, preclinical regulatory requirements and translational project management. Consequently, delivery of treatments from bench to bedside can be devastatingly slow.
“I think everyone in this field would agree that better collaboration is needed,” says Dr Catriona Crombie, Head of Rare Diseases at LifeArc. “Rare diseases are challenging precisely because they are rare; there are no rare disease-specific conferences and academic societies where researchers can gather to discuss their latest findings.”
The centres will unite leading UK scientists
and rare disease specialists for the first time.
Encouraging collaboration between leading scientists
In response, LifeArc has invested £40 million into launching four new virtual research centres in the UK — hosted by four lead universities — to improve tests and treatments for people with rare diseases. These are the LifeArc Centre for Rare Respiratory Diseases; the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases; the LifeArc Centre for Rare Mitochondrial Diseases; and the LifeArc Centre for Acceleration of Rare Disease Trials.
The centres will unite leading UK scientists and rare disease specialists for the first time, fostering new interdisciplinary collaborations and enhancing access to facilities and training.
Funding awarded for rare disease research
Each centre has been awarded funding because it holds real promise for delivering change for people living with rare diseases, notes Dr Crombie. “We’ve invested in areas where there is significant unmet need, but where enough of the fundamental science is understood for diagnostics, drugs or interventions to be helped through the translational pathway,” she explains.
Scientists, academics and researchers across the centres are excited to work together. “We’re optimistic that the centres will facilitate more rare disease research in the UK and help it move at a faster pace,” says Dr Crombie.
