Incidence and characterisation of sight loss in giant cell arteritis
Research type
Research Study
Full title
A “yellow card” reporting system for sight loss in giant cell arteritis
IRAS ID
163036
Contact name
Bhaskar Dasgupta
Contact email
Sponsor organisation
Southend University Hospital NHS Foundation Trust
Clinicaltrials.gov Identifier
24PMR13 (2013), Fight for Sight Small Grant Award
Duration of Study in the UK
1 years, 5 months, 0 days
Research summary
Giant cell arteritis (GCA) is a large vessel vasculitis (inflammation of the major blood vessels) common in older people. In the UK, its age corrected incidence is 22 in 100,000 people per year. Untreated, affected people can have ischaemic complications due to blockage of the blood vessels that can have catastrophic consequences, in particular when the eyes are affected. Between 15-25% of patients reported in scientific literature already have loss of sight when their condition is diagnosed. This is probably because of late presentation and late recognition.
Sight loss in older people is associated with considerable disability. We have found that a fast track pathway reduces the incidence of sight loss in a cost-effective manner. We believe there is scope for a fast-track assessment model nationwide. However, in order to guide health strategists and further research, accurate information regarding the incidence of sight loss is required.
We would estimate >1000 patients presenting with sight loss in the UK per year, of which >100 would be expected to have sight loss in both eyes. However between 2008 and 2011 only 46 people were recorded as having registrable sight loss due to GCA. This is likely due to underreporting since certificates of visual impairment do not include GCA as a category.
To study this, we would like to record all patients newly diagnosed with GCA, with and without sight loss. We would ask participating rheumatologists and ophthalmologists to send an anonymised report of all new patients they see with an electronic “reporting card”. Information will be collected over 1 year to allow us to estimate the incidence in that year.
We will also collect some information about the reported patients to see if there are any noticeable differences between patients with and without sight loss.REC name
London - Hampstead Research Ethics Committee
REC reference
14/LO/1816
Date of REC Opinion
13 Oct 2014
REC opinion
Favourable Opinion