Supporting early-stage inherited retinal diseases
This mixed methods project aims to understand perspectives of people with early-stage inherited retinal diseases to improve low vision access and support.
Project title: Supporting early-stage inherited retinal diseases
Supervisors: A/Prof Lauren Ayton, Dr Tom Edwards, Dr Ceecee Britten-Jones
Suitable for: Honours, MSc, PhD
Most IRDs cause progressive vision loss, generally from a young age. While there is research on the emotional and psychological impacts of vision loss, little has been done to evaluate how these factors influence people’s behaviour. In particular, many people report not knowing how to navigate discussions about their condition when they are first diagnosed, or when their vision loss is still undetectable to other people such as before the need for aids such as canes and dogs. This mixed methods project uses both quantitative and qualitative methods to investigate perspectives of people with early-stage vision loss from IRDs.
This study is related to the Victorian Evolution of IRDs Natural History Register (VENTURE) at CERA and the University of Melbourne. More information about the VENTURE registry can be found here: https://onlinelibrary.wiley.com/doi/full/10.1111/ceo.14110