Sickle Eye Project
Research type
Research Study
Full title
SICKLE EYE PROJECT: Prevalence of visual impairment due to sickle cell retinopathy and maculopathy in the United Kingdom
IRAS ID
333849
Contact name
Christiana Dinah
Contact email
Sponsor organisation
London North West University Healthcare NHS Trust
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Sickle cell disease (SCD) is one of the most common genetic disorders in the United Kingdom, affecting over 14000 people. It can cause reduced vision, most commonly by by affecting the film that coats the inner part of the eye – known as the retina. It causes unwanted blood vessels to grow on the retina, which can either bleed or pull the retina away from the wall of the eye causing significant sight loss. However, these unwanted blood vessels can shrink away on their own. We are not currently able to predict in which eyes the blood vessels will bleed or pull the retina and in which eyes the blood vessels will shrink on their own. We also do not know how many people with sickle cell disease in the UK have suffered loss of vision due to the effects of sickle cell disease on the retina.
- In this research study, we want to find out how common it is for people with sickle cell disease to have reduced vision due to the effects of sickle cell disease on their retina. We also want to know how the severity of sickle cell disease affects the chance of having reduced vision due to sickle cell disease. We also want to know how any reduction in vision affects quality of life when you have sickle cell disease. We will do this by measuring the vision and pictures of the retina taken from 600 people with sickle cell disease from different parts of the UK. We will also ask them to complete a questionnaire assessing how their vision affects daily activities and whether they find attending the eye clinic for an eye check acceptable. Participation in the study will only require one visit and tests that are quick, painless and commonly performed in the NHS.REC name
South Central - Oxford A Research Ethics Committee
REC reference
23/SC/0363
Date of REC Opinion
6 Oct 2023
REC opinion
Further Information Favourable Opinion