Scientific research has enhanced our understanding of the causes of sight loss, enabling the development of novel treatments. For this research to be effective, it is crucial that investigators listen to with people affected by sight loss, to help set priorities in the future direction of research. Such engagement was evident at our first Retina Patient Day last year, and we’re pleased to note a further opportunity to help shape the future of eye research – the James Lind Alliance is bringing together patients, carers and researchers to identify and prioritise the top 10 ‘unanswered questions’ relating to sight loss.
The Alliance has set up the Sight Loss and Vision Priority Setting Partnership together with a wide range of organisations involved in tackling sight loss. This Partnership is seeking to understand your priorities for future research into eye health. In consultation with people affected by sight loss, their partners, relatives and carers and eye health professionals, the Partnership has built lists of ‘unanswered questions’ relating to many types of sight loss. You now have a chance to rank these questions in order of priority – to help shape the future direction of sight loss research.
This vital exercise will inform groups like the Gene and Cell Therapy Group at the UCL Institute of Ophthalmology as we investigate sight loss in the future. To participate in this consultation, please visit http://www.sightlosspsp.org.uk/. There, you will find a list of different types of sight loss in the right-hand side menu. Clicking on the type of sight loss you are interested in will download a Word document with two forms, A and B. Form A is a list of ‘uncertainties,’ or unanswered questions, from which you are asked to choose ten as priorities for future research. Form B asks you to rank the questions you’ve chosen from 1 to 10 in order of priority, and has instructions on how to complete and return both Forms including deadlines for submission.
Some important deadlines include:
- Age-related macular degeneration (AMD) – April 12th 2013
- Inherited retinal disease (including retinitis pigmentosa (RP), achromatopsia, Leber congenital amaurosis (LCA) and Stargardt disease) – April 15th 2013
- Childhood-onset eye disorders (including amblyopia, coloboma and aniridia) – April 17th 2013
- Ocular inflammatory diseases (including uveitis, birdshot retinopathy and Behçet’s disease) – March 28th 2013
This consultation is an excellent chance for your voice to be heard by the researchers investigating causes of and treatments for sight loss – and the funding bodies that support their research. Here’s Professor James Bainbridge, leading consultant ophthalmologist at Moorfields Eye Hospital and Professor of Retinal Studies, on the importance of engaging with people affected by sight loss when setting research priorities:
“Knowing which questions people with sight loss want answered helps us direct our research efforts into areas that will improve peoples’ lives. It is vital to engage people affected by sight loss in the design of future research to ensure that our efforts are closely directed to their needs.”
Please return the forms to firstname.lastname@example.org, and direct any enquiries regarding the consultation to Fight for Sight on 0207 264 3900.