Research study measuring the impact of AMD on quality of life

If you have AMD, you could help this MDFA-funded study.

Researchers at the University of New South Wales (UNSW) are looking for volunteers with age-related macular degeneration (AMD) to help with an MDFA-funded study exploring the impact of AMD on quality of life.

Chief investigator Dr Sheela Kumaran was awarded an MDFA Research Grant in May 2021 for this project, which is investigating the symptoms, activity limitations, emotional wellbeing, and all-round quality of life of people living with AMD. The study will lead to the development of a technologically advanced computerised questionnaire that can be used to evaluate the effectiveness of AMD treatments from the patients’ perspective.

Dr Kumaran’s team is looking for people with AMD over the age of 50 to complete:

• An online/ paper/ telephone survey about the impacts of AMD on quality of life
• A diary to record costs associated with AMD for a period of 30 days

The survey has three parts, addressing different aspects of quality of life and participants can choose to complete either the full survey, which would take about two hours, or a part of the survey, which would take 30-45 minutes. The survey can be done online, on paper or over the phone. The cost diary will be mailed to participants with a reply-paid envelope and takes less than five minutes to complete every day for a period of 30 days.

To learn more about the research, inclusion and exclusion criteria, please visit https://redcap.link/AMDQoLproject. That link will take you to the participant information sheet, a screening questionnaire to see if you’re eligible to participate, then an online consent process. You can also directly access the participant information sheet by clicking here: AMD participant information

Study details

Research study title: Measuring the breadth and the depth of the quality-of-life impacts caused by age-related macular degeneration (AMD)

UNSW ethics approval number: HC210659

Get involved: Visit https://redcap.link/AMDQoLproject, and complete the screening questionnaire and consent process. Eligible participants can fill out an expression of interest form, which will be reviewed by the researchers, who may then contact you with further information.

If you have any questions about participation, please contact the chief investigator Dr Sheela Kumaran, Research Fellow on 02 9065 9964 or [email protected]