Research grant for Inherited retinal disease care

Fight for Sight has announced £500,000 funding for a new research programme to develop an optimal model of care services for patients with inherited retinal diseases. The five-year programme will be led by Professor Graeme Black, Director of the National Institute for Health Research Manchester Biomedical Research Centre, supported by Professor Tony Moore of Moorfields Eye Hospital and Miss Susie Downes of Oxford Eye Hospital.

Genetic disorders account for over half of childhood visual impairment and one in 3,500 of the population are affected by inherited retinal diseases. Although there is no effective prevention or cure, research has identified many of the genes that cause inherited retinal disease and a free national service for genetic testing exists in the UK. However, access to the testing and the standard of support available to patients varies throughout the country.

Working with patients and health professionals, Professor Black will examine existing effective models of care provision for families with genetic retinal diseases and will use the findings to develop an optimal clinical and diagnostic care service. The research programme will also investigate the potential of new technologies in DNA sequencing to identify patients with faults in genes known to cause eye disease and to identify new genes.

Professor Black said of his award: “I am delighted to be working with Fight for Sight. There is an increasing recognition that we need to improve our understanding of the needs of those with inherited conditions that cause reduced vision. This research will help us to ensure that provision of care, and in particular of genetic testing, is as broadly available as possible.”

Michèle Acton, chief executive of Fight for Sight, is delighted the charity is able to fund this important work: “The outcome of this research funded by Fight for Sight will make a real difference to patients and families living with inherited eye disease.”