Research Centre: University of New South Wales
Location: This study will be conducted virtually in Australia
Lead Researchers: Dr Sheela Kumaran, Prof Konrad Pesudovs, Prof Lisa Keay, A/Prof Gerald Liew
HREC: This study has been reviewed and approved by the University of New South Wales Human Research Ethics Committee
Research Funder: This research is being funded by the Macular Disease Foundation Australia.
About the Study
Age-related macular degeneration (AMD) is currently the leading cause of blindness among older Australians. AMD affects the central part of the vision affecting our ability to read, recognise faces, drive and be independent. AMD has significant implications on the quality of life of individuals.
Researchers at the University of New South Wales are conducting a virtual study that aims to understand the impacts of AMD on quality of life from the patient’s perspective. The study also explores the financial burden of AMD on an individual’s life. This study is an opportunity for people with AMD to have their voice represented in outcome measures used to assess the disease and treatment effects.
Would you help researchers and doctors measure what matters to you? Join this virtual study today.
How can I participate?
- Answer a quality of life survey: You can choose to answer the survey online, on paper or on the telephone. The survey has 3 parts, and you can choose to complete the full survey, which would take about 2 hours or a part of the survey (30-45 minutes).
- The second part of the study is optional. You will be asked to record all the costs associated with AMD for 30 days in a diary. The cost diary will be mailed to you with a reply-paid envelope. It would take less than 5 minutes to complete the cost diary on a day-to-day basis.
- Participants will be helping researchers and doctors understand how AMD affects different aspects of their life, including social, emotional, and economic dimensions.
- Participants can join and participate in this virtual study from the comfort of their own home.
- Participants will be contributing valuable information that may benefit those with AMD in the future.
- Participants will be helping to advance medical research.
- If you decide to participate in the study and later feel that you no longer wish to be part of it, you can withdraw at any time.
- Any information that you provide will be kept strictly confidential, except as required by law.
Who Can Participate?
- Individuals aged 50 and above who are diagnosed with AMD (any stage, early to advanced)
- Must be living in Australia
- Must be fluent in English
- Must not have cataracts that require surgery
- Must not have been diagnosed with any other ocular disease, such as glaucoma, Stargardt’s disease, best disease, retinitis pigmentosa or macular hole
- Must not have a known history of psychological problems
About the Research Centre:
University of New South Wales
UNSW Sydney is a world-leading university in research, teaching, and innovation. Established in 1949, their diverse community includes 64,000 students from over 130 countries and a global alumni community of over 300,000. The UNSW School of Optometry and Vision Science is regarded internationally for its strengths in contact lens, anterior segment, retina and vision science research and is the largest in Australasia. The investigators of this study are part of the Public Health and Health Systems Research Group at the School of Optometry and Vision Science, which aims to improve access to eye care, innovate cost-effective models of eye care delivery, promote evidence-based and patient-centered eye care and enhance independence and quality of life of people affected by vision impairment.
UNSW Sydney and Trialfacts
UNSW Sydney works hand-in-hand with Trialfacts to ensure the smooth flow of participant recruitment. The UNSW School of Optometry will be the ones who will take overall responsibility for eligible participants and will deal with any potential questions or concerns, whilst Trialfacts will handle all advertising.
Due to the COVID-19 pandemic, the study will be conducted remotely which means there will be no in-person visits, allowing you to participate in the comfort of your own home.