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Neovascular age related macular degeneration at University Hospitals Birmingham

Population Size

Not reported
Population Size statistic card

Years

2007 - 2021

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

England

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

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

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

2-6 months

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: Clinic, Secondary care - Outpatients, Secondary care - In-patients

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