Steve Bates, BIA CEO: Back in November 2013, I announced that Fight for Sight – the UK’s leading charity dedicated to funding eye research to prevent sight loss and treat eye disease – had been chosen as BIA’s official charity for 2014. Recently they have been involved in a project with the National Institute for Health Research (NIHR) Horizon Scanning Centre (HSC), helping to map the landscape in inherited eye disease. This collaboration has led to the identification of 40 potential new treatments – including technologies, drug and stem cell treatments and gene therapies – around the world, which are currently being developed for inherited retinal diseases. This is vital information that could provide the backbone of a value story for anyone developing a product in this area.

Once you’ve read Carol’s blog below, do take a look at the publication. By including patient perspectives in this analysis for the first time, the report has been able to identify the treatments likely to have the biggest impact and this approach is at the heart of putting the patient at the centre of developing a treatment. It also ensures from a company perspective, that what is being developed is what patients actually want, and what payors should be willing to pay for.

Best,

Steve

 

Carol Bewick, Director of Policy and Communications at Fight for Sight: Knowing what your beneficiaries want and understanding the landscape in which you operate are important to any charity.  But for a medical research charity that has to turn away five out of every six research grant applications, knowledge and understanding are vital to inform priorities.

Fight for Sight is the UK’s leading charity dedicated to funding pioneering research to prevent sight loss and treat eye disease.  Money is very limited and we have to prioritise.

In 2013 we led the Sight Loss and Vision Priority Setting Partnership which has now established the priorities for eye research based on the views of 2,220 patients, relatives, carers and eye health professionals.

But that was just the start.  With limited funds we need to understand what research is already being undertaken and how we can ensure all funders co-ordinate activities for maximum impact.

Artistic EyeA great example of this relates to work around the priorities for people with inherited eye diseases, now the most common cause of blindness in working age adults in England and Wales and the second most common in childhood.  With no cure or treatment available, the highest priority was: “Can a treatment to slow down progression or reverse sight loss in inherited retinal diseases be developed?”

Being told that you are going blind and nothing can be done is devastating.  Many patients, their friends and family want to know what research is being undertaken and how far we are away from a treatment.

To help answer these questions, the National Institute for Health Research (NIHR) Horizon Scanning Centre (HSC), working with Fight for Sight, has identified 40 potential new treatments around the world which are currently being developed for inherited retinal diseases in their latest exercise published on 16 July. These include technologies, drug and stem cell treatments and gene therapies. For the first time, NIHR HRC asked patients how useful they felt the treatments would be, whether they would try the proposed treatment and what looked exciting.

Professor Tara Moore and Sarah Atkinson

Professor Tara Moore and Sarah Atkinson

The report is excellent news.  It helps inform patients and gives hope that treatments are in the pipeline.  But we can’t be complacent.  Nine out of every ten trials still fail and therapies that may help address one particular inherited eye disease may not work for others.

We have taken important steps in making the landscape less foggy. We know what patients want and we know what is currently happening.  We now need funders to work together to build on current research and ensure that new funding is maximised and allocated in a co-ordinated way.

Fight for Sight is the BIA 2014 charitable partner. They are the main UK funder of research to prevent sight loss and treat eye disease. For further information about Fight for Sight go to www.fightforsight.org.uk. Click here to view the horizon scanning report.