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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Miss Lara Barcella
+44 (0)2088695818
lnwh-tr.sickleiproject@nhs.net


Miss Christiana Dinah
+44 (0)2084532253
christiana.dinah@nhs.net


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Be Part of Research - Trial Details - The Sickle Eye Project: Prevalence of visual impairment due to sickle cell retinopathy and maculopathy in the United Kingdom
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The Sickle Eye Project: Prevalence of visual impairment due to sickle cell retinopathy and maculopathy in the United Kingdom

Recruiting

Open to: All Genders

Age: Other

London London

Medical Conditions

Visual impairment, retinopathy and maculopathy in patients with sickle cell disease

This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


Sickle cell disease (SCD) is one of the most common genetic disorders in the United Kingdom, affecting over 14,000 people. It can cause reduced vision, most commonly 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.
The aim of this study is 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. The researchers also want to know how the severity of sickle cell disease affects the chance of having reduced vision due to sickle cell disease. They also want to know how any reduction in vision affects quality of life when you have sickle cell disease. The researchers 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. They will also 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.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

21 Nov 2023 31 Oct 2025

Participants will be asked to attend an eye clinic appointment where their pupils will be dilated and eye tests and scans will be performed. Participants will also be asked to complete two questionnaires, one to asses vision-related quality of life and one to assess the acceptability of the tests carried out.


Anyone over the age of 16 years with a diagnosis of sickle cell disease

You can take part if:



You may not be able to take part if:


1. Inability to consent 2. Poor image quality3. Age <16 years4. Sickle cell trait only


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • Whittington Health NHS Trust
    The Whittington Hospital Magdala Avenue
    London
    N19 5NF
  • London North West University Healthcare NHS Trust - Central Middlesex Hospital
    Acton Lane Park Royal
    London
    NW10 7NS

There will be no direct benefits to participants. However, it is hoped that the findings from this study will help to improve our understanding of how many people with sickle cell disease are affected by sight loss and how we can design better healthcare services for them. It is also hoped the information gathered will help us to understand how the treatment of sickle cell disease affects the complications that may develop in the eye and support the design of treatments that prevent sight loss.

Miss Lara Barcella
+44 (0)2088695818
lnwh-tr.sickleiproject@nhs.net


Miss Christiana Dinah
+44 (0)2084532253
christiana.dinah@nhs.net



The study is sponsored by London North West Healthcare NHS Trust and funded by National Institute for Health and Care Research; ROCHE PRODUCTS LIMITED.



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Read full details for Trial ID: ISRCTN16383733

Or CPMS 58836

Last updated 24 April 2025

This page is to help you find out about a research study and if you may be able to take part

You can print or share the study information with your GP/healthcare provider or contact the research team directly.   

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