Great Ormond Street Hospital Children’s Charity (GOSH Charity) has announced a £2.5 million investment into 11 pioneering child health research projects, including a project at the University of Warwick to support children with complex needs. The funding is the UK’s largest charitable grant-making scheme of its kind dedicated to paediatric rare disease research.

The GOSH Charity and Sparks National Call is part of an ambition to help unlock breakthroughs in child medicine by supporting researchers’ investigations into the causes of rare diseases in children, and conditions that start in childhood. The funding will also help supercharge their efforts to discover new and better ways to diagnose, treat, and ultimately cure these life-changing and life-limiting conditions.

Researchers based at six institutions across the country will benefit from the cash boost, including University of Warwick, The University of Manchester, and University College London Great Ormond Street Institute of Child Health, University of Southampton, University of Oxford, and University of Cambridge.

£110,067 has been awarded to a project led by Dr Hayley Crawford at Warwick Medical School that will develop a clinical checklist for causes of poor behavioural outcomes in children with moderate-profound intellectual disability and complex needs. Children with intellectual disability often have complex clinical needs resulting from physical, sensory, cognitive and behaviour problems. At present, there is no established tool that ensures each of the common causes of behaviour are considered and reviewed regularly in children with moderate-profound ID and complex needs.

Dr Hayley Crawford from the University of Warwick said: “I am delighted to have received funding from GOSH Charity which will enable us to further our research to help children with intellectual disability and their families. It’s fantastic to know that the charity is committed to supporting child health researchers across the UK.”

Other successful projects to be chosen for funding include:

• Developing more effective and kinder treatment for Diamond-Blackfan Anaemia, a rare blood disorder that affects the bone marrow’s ability to produce red blood cells, and can cause problems with a child’s growth, immune system, and heart
• Identifying a new therapy to address the underlying mechanisms which cause Dravet Syndrome, a life-limiting form of epilepsy
• Uncovering the underlying mechanisms in acrodysostosis and developing a technique for testing new potential therapies
• Helping to better understand the pain experienced by children with childhood cancer, which could help manage their pain and enhance their quality of life 

GOSH Charity and Sparks invited researchers from across the UK to apply for funding as part of its National Call. Of the £2.5 million pledged to support research into some of the most difficult and hard to treat childhood diseases, Sparks contributed £900,000.

£112,500 has been made available by two condition-specific partner charities (Acrodysostosis Support & Research, and Dravet Syndrome UK) to help co-fund research into these diseases.

Louise Parkes, Chief Executive at GOSH Charity, said: “The impact of research has never been more visible than over the past year, following the development of the COVID-19 vaccine. It shows that essential funding into research can have a life-changing effect on so many people. We’re thrilled that this year’s GOSH Charity and Sparks National Call is investing over £2.5 million into paediatric research projects, with huge thanks to our partner charities, without whom we wouldn’t be able to deliver the National Call. These projects have the potential to deliver kinder and more effective treatments for some of the rarest and most complex conditions and, more importantly, offer children and their families hope for a better future.”

The National Call reflects GOSH Charity’s commitment to paediatric research funding. To find out more about what research GOSH Charity funds, and how Great Ormond Street Hospital has been behind some of the biggest breakthroughs in child medicine, visit here.

To find out more about the National Call, and to apply for next year’s funding please visit here 

-ENDS-

NOTES TO EDITORS

About Great Ormond Street Hospital and Great Ormond Street Hospital Children’s Charity:

Great Ormond Street Hospital is one of the world’s leading children’s hospitals with the broadest range of dedicated, children’s healthcare specialists under one roof in the UK. The hospital’s pioneering research and treatment gives hope to children from across the UK with the rarest, most complex and often life-threatening conditions. Our patients and families are central to everything we do – from the moment they come through the door and for as long as they need us.

Great Ormond Street Hospital Children’s Charity needs to raise money to support the hospital to give seriously ill children, the best chance for life. The charity funds research into pioneering new treatments for children, provides the most up-to-date medical equipment, funds support services for children and their families and supports the essential rebuilding and refurbishment of the hospital. You can help us to provide world class care for our patients and families. For more information visit www.gosh.org

The children’s medical research charity Sparks merged with GOSH Charity at the end of March 2021.

About Dravet Syndrome UK

Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome, a rare, life-limiting and life-long form of epilepsy that affects both children and adults. In addition to treatment-resistant seizures, Dravet Syndrome encompasses intellectual disability and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep. DSUK’s mission is to bring hope to those affected by Dravet Syndrome by:

• Offering emotional, practical and financial support to families
• Raising awareness and understanding among medical professionals
• Funding medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and to hopefully one day find a cure

Visit www.dravet.org.uk for more information about Dravet Syndrome and how DSUK is helping to bring hope to families living with this condition.

About Acrodysostosis Support & Research:

Acrodysostosis Support & Research is an independent charity set up by parents, and volunteers and run by our Acrodysostosis community. We are dedicated to improving the lives of those affected by Acrodysostosis through support and medical research.

We do this by:

• Providing support and guidance and a sense of community as well as friendship to families affected by Acrodysostosis.
• Raising awareness and understanding of Acrodysostosis among the medical, the rare disease and the wider communities.
• Funding medical research to improve the understanding and management of Acrodysostosis, identify treatments and work towards finding a cure.

Visit https://www.acrodysostosis.org/ for more information about Acrodysostosis and how Acrodysostosis Support & Research is helping to bring hope to families living with this ultra rare disease.

21 June 2021

University of Warwick press office contact:

Peter Thorley

Media Relations Manager (Warwick Medical School and Department of Physics) | Press & Media Relations | University of Warwick
Email: peter.thorley@warwick.ac.uk 

Mob: +44 (0) 7824 540863