Core Outcome Measures in Effectiveness Trials

Development of a core outcome set for age-related macular degeneration interventions, specifically for clinical trials of geographic atrophy

General Information

AMD is an age-related chronic condition that can lead to blindness. In the UK it is the leading cause of blindness, and with our ageing population the prevalence and incidence of AMD will increase.

The goal of this project is to establish a framework for the development of a standardised set of core outcomes of interventions for AMD which will improve decision making by patients, clinicians and health policy makers. The research objectives are: (i) Determine the breadth of reported clinical and patient-reported outcomes and measures used in studies assessing the effectiveness of interventions for AMD; (ii) Assess how comprehensive reported outcomes are and identify knowledge gaps; (iii) Determine if a standardised set of core outcomes can be identified and defined for interventions for AMD from the literature; (iv) Assess efforts at standardising core outcomes in clinical trials and determine if any guidance is available; (v) Identify important outcomes and measures of interventions for AMD taking into account the views of patients, clinicians and NHS policy makers; (vi) Derive a set of core outcome measures and assess its feasibility and acceptability by patients

Augusto Azuara-Blanco (Principal Investigator)
Ruth Hogg
Usha Chakravarthy
Aniela Krezel
Lynne Lohfeld

Further Study Information

Current Stage:
Completed – pending publication
October 2013 - September 2016
Funding source(s):
Queen’s University Belfast

Health Area

Disease Category
Eyes & vision

Disease Name
Age-related macular degeneration (AMD)

Target Population

Age Range
55 - 100


Nature / type of Intervention


Delphi process
Focus group(s)
Systematic review

The research will utilise a mixed methods approach of qualitative and quantitative studies. Phase 1 will identify and assess the range of clinical and patient-reported outcomes and measures used and identify knowledge gaps, by way of systematic reviews. Phase 2 will refine and build on identified outcomes using a DELPHI study on AMD experts, and focus groups and semi-structured interviews with patients who have AMD. A list of core outcomes and the appropriate measures will be identified, assessed and tested for acceptability and utility using a questionnaire survey of AMD experts and patients with AMD.

Stakeholders Involved

Clinical experts
Consumers (patients)

Study Type

COS for clinical trials or clinical research

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