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Neovascular age related macular degeneration at University Hospitals Birmingham

Population Size

Not reported

Years

2007 - 2021

Associated BioSamples

None/not available

Geographic coverage

United Kingdom

England

Lead time

Not applicable

Summary

The University Hospitals Birmingham (UHB)  Age-related Macular Degeneration (AMD) dataset is a longitudinal dataset consisting of routinely collected clinical metadata from patients receiving treatment for AMD at UHB, from 2007 to the present.

Documentation

Background: Age-related macular degeneration (AMD) is a degenerative disease of the human retina affecting individuals over the age of 55 years. AMD is the leading cause of blindness in industrialized countries. Worldwide, the number of people with AMD is predicted to increase from 196 million in 2020 to 288 million by 2040.

The UHB AMD Dataset is a longitudinal dataset consisting of routinely collected imaging and clinical metadata from patients receiving treatment for age-related macular degeneration (AMD) at UHB, from 2007 to the present.

This dataset encompasses all patients at UHB who have received at least one injection of either Lucentis (ranibizumab) or Eylea (aflibercept) or avastin. This dataset will include data from both eyes in each case - for example, it will include data from fellow eyes that are not receiving injections. For these reasons, the dataset will include longitudinal data from a mixture of eyes with both “dry” and “wet” AMD. Clinical metadata includes demographic information, visual acuities (predominantly measured with Early Treatment Diabetic Retinopathy Study (ETDRS) charts), treatment, and outcomes.

This dataset is continuously updating, however, as of October 2021, it consisted of 15063 eyes receiving treatment for AMD. This is a large single centre database from patients with AMD and covers more than a decade of follow-up for these patients.

Geography The Queen Elizabeth Hospital is one of the largest single-site hospitals in the United Kingdom, with 1, 215 inpatient beds. Queen Elizabeth Hospital is part of one of the largest teaching trusts in England (University Hospitals Birmingham). Set within the West Midlands and it has a catchment population of circa 5.9million. The region includes a diverse ethnic, and socio-economic mix, with a higher than UK average of minority ethnic groups. It has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of diabetes, physical inactivity, obesity, and smoking.

Data source: Ophthalmology department at Queen Elizabeth Hospital, University Hospitals Birmingham NHS Foundation Trust, Birmingham, United Kingdom.

Dataset type
Health and disease
Dataset sub-type
Not applicable

Keywords

Age-Related Macular Degeneration, Choroidal Neovascularization, Choroidal Neovascular Membrane, Occult, Classic, Exudative Age-Related Macular Degeneration, Geographic Atrophy, Drusen, Neovascular Age Related Macular Degeneration, Dry, Wet, Intravitreal Anti-Vegf Injections, Subretinal Fibrosis, Disciform Scar, Sub-Rpe Neovascularization, Lucentis, Ranibizumab, Eylea, Aflibercept, Etdrs, Haemorrhage, macula, Retina, Retinal Angiomatous Proliferation, Referral, Vision, Visual Acuity, Visual Distortion, Metamorphopsia, Micropsia, Scotoma, Sight Loss, Sight Impairment, Antioxidant Supplementation, Mineral Supplementation, Verteporfin Photodynamic Therapy, Laser, Avastin

Observations

Observed Node
Disambiguating Description
Measured Value
Measured Property
Observation Date

Events

1361 patient 15063 eyes receiving treatment

1361

Count

01 Oct 2021

Provenance

Purpose of dataset collection
Care
Source of data extraction
EPR
Collection source setting
Clinic, Secondary care - Outpatients, Secondary care - In-patients
Patient pathway description
The UHB AMD dataset is representative of the patient pathway for diagnosis and treatment of wet AMD, and longitudinal follow-up.
Image contrast
Not stated
Biological sample availability
None/not available

Structural Metadata

Details

Publishing frequency
Annual
Version
1.0.0
Modified

08/10/2024

Distribution release date

01/10/2021

Citation Requirements
University Hospitals Birmingham NHS Foundation Trust

Coverage

Start date

01/06/2007

End date

30/09/2021

Time lag
2-4 weeks
Geographic coverage
United Kingdom, England, West Midlands
Minimum age range
50
Maximum age range
110
Follow-up

10 Years

Accessibility

Language
en
Controlled vocabulary
NHS NATIONAL CODES
Format
SQL, CSV

Data Access Request

Dataset pipeline status
Not available
Time to dataset access
Not applicable
Access method category
TRE/SDE
Access service description
INSIGHT adheres to HDRUK data access principles including the five SAFES anonymised data is provided into an agreed Trusted Research Environment such as the PIONEER Microsoft Azure TRE at University Hospitals Birmingham NHSFT or equivalent external safe environment, under data license.
Jurisdiction
GB-ENG, GB-GB, AF
Data use limitation
Research-specific restrictions
Data use requirements
Project-specific restrictions
Data Controller
University Hospitals Birmingham NHS Foundation Trust
Data Processor
NOT APPLICABLE

Dataset Types: Health and disease


Collection Sources: No collection sources listed