The National Institute for Health Research (NIHR) Horizon Scanning Centre (HSC), working with Fight for Sight, has identified 40 potential new treatments which are currently being developed for inherited retinal diseases in their latest horizon scanning exercise. These potential treatments may be able to help thousands of patients.
Inherited retinal diseases are now the most common cause of blindness in working age adults in England and Wales and the second most common in childhood. Currently, there is no cure or treatment.
Fight for Sight, the main UK charity dedicated to funding pioneering eye research to prevent sight loss and treat eye disease, was keen to help support the NIHR. In 2012-13, the charity co-ordinated the James Lind Alliance (JLA) Sight Loss and Vision Priority Setting Partnership (PSP) looking to set priorities for eye research. In this major consultation those with first-hand experience of sight loss (patients, relatives, carers and eye health professionals) were asked what were the most important questions they felt should be addressed by medical research.
The top priority in relation to inherited retinal diseases was: "Can a treatment to slow down progression or reverse sight loss in inherited retinal diseases be developed?"
For the first time the NIHR has been able to respond to patient priorities by undertaking this horizon scanning exercise to identify the pipeline of possible treatments. In addition, focus groups with patients and clinical experts, facilitated by Fight for Sight, were held to draw on the knowledge of people with experience of inherited eye diseases and their views of potential treatments.
As a result a potential 40 new and emerging technologies were identified. These included; nine gene therapy approaches, ten medical devices, five pharmacological (drug) technologies, and five regenerative and cell development approaches. The other eleven technologies identified were at a very early stage of development. The majority of the technologies identified are currently in or expected to be in clinical trials shortly.
Joanna Smith, Senior Analyst at the NIHR HSC said: "We consulted clinical experts and developers, searched specialised databases and other online sources to find what is being developed. We found 40 new and emerging technologies. This is the first time we have asked for a patient perspective on our search. Their comments gave a totally different perspective in some areas to the clinical experts we spoke to but there were also some strong synergies."
Michele Acton, Chief Executive of Fight for Sight said: "When we consulted with patients, relatives, carers and eye health professionals about their research priorities, we committed to taking them forward. It is encouraging to know how much research is going towards addressing inherited eye diseases, for which there are currently no treatments. With further support and funding these therapies and technologies could have a major impact on people's lives.
"At Fight for Sight we are funding eye research at 35 different universities and hospitals across the country. We want to create a future everyone can see. We're delighted that the latest NHIR HSC horizon scanning exercise is showing a range of promising treatments for inherited eye diseases."
To view the report click here.