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The Sickle Eye Project: Prevalence of visual impairment due to sickle cell retinopathy and maculopathy in the United Kingdom

The Sickle Eye Project: Prevalence of visual impairment due to sickle cell retinopathy and maculopathy in the United Kingdom

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
ISRCTN
Registry ID
ISRCTN16383733
Enrollment
600
Registered
2024-03-19
Start date
2023-11-21
Completion date
Unknown
Last updated
2025-05-05

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

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

Interventions

People with sickle cell disease attending their haematology clinic will be informed about the study by their clinical team. They will be provided with the participant information sheet detailing the s

Sponsors

London North West Healthcare NHS Trust
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: 1. Willingness to participate 2. Ability to provide informed consent 3. Age 16 years or older 4. Diagnosis of SCD of any genotype

Exclusion criteria

Exclusion criteria: 1. Inability to consent 2. Poor image quality 3. Age <16 years 4. Sickle cell trait only

Design outcomes

Primary

MeasureTime frame
The prevalence of visual impairment due to sickle cell retinopathy or maculopathy: best corrected visual acuity LogMAR =0.3 in at least one eye measured through best corrected visual acuity test at baseline visit

Secondary

MeasureTime frame
1. The prevalence of each stage of sickle cell retinopathy and maculopathy and correlation with: 1.1. Number of hospital admissions with acute sickle cell episodes in the past 12 months 1.2. Serum HbF level 1.3. Serum Hb level Collection into source document of the number of hospital admissions in the past 12 months and serum HbF and Hb level results within 3 months of study entry at baseline visit 2. The impact of sickle cell retinopathy and maculopathy on vision-related quality of life measured using the NEI-VFQ 25 questionnaire at baseline visit 3. The acceptability to patients of retinal imaging and routine screening for sickle cell retinopathy and maculopathy measured using acceptability questionnaire at baseline visit

Countries

England, United Kingdom

Contacts

Public ContactLara Barcella
lnwh-tr.sickleiproject@nhs.net+44 (0)2088695818

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026