Launch of our Charles Bonnet Syndrome survey

October 5, 2020

We’re launching a new survey to capture the prevalence and experiences of Charles Bonnet Syndrome (CBS) in Ireland. This survey is conducted in collaboration with Dr Alison Reynolds and her research team based in University College Dublin.

Take part in our survey on Charles Bonnet Syndrome.

CBS is a side effect sometimes associated with sight loss. It can involve seeing visions or images that are not there. The clinical term for these visual disturbances is ‘hallucinations’, however it is important to remember this is not a mental health condition, and more the reaction of a healthy brain to vision loss. The hallucinations and experiences of CBS vary greatly from person to person.

CBS is quite common, but many people are reluctant to share these experiences with their doctor and often go undiagnosed. Therefore, there is a need for greater awareness.

The overall goal of this study is to learn more about CBS from a patient perspective and to use this knowledge to raise awareness of the condition with patients, doctors, and the general public. A key aim of the survey is to gain an insight into the prevalence and experiences of CBS in Ireland. It is important to try to understand how these hallucinations affect people and the impact they may have on their daily lives.

This survey will be distributed to adults living with a visual impairment in Ireland. It is important to note that to capture an accurate view of the prevalence and knowledge of CBS in Ireland, we ask everybody to take part in the survey whether they have the condition or not. The information collated from this study will be used to spread awareness of CBS among clinicians, patients, and care givers.

This survey and any associated information will be kept strictly confidential. The survey itself is largely multiple-choice questions and should not take longer than 20 minutes to complete. We are hoping to present some preliminary data from this study at our annual Public Engagement Day, taking place on Saturday November 07, 2020, over the Zoom platform.

Take part in our survey on Charles Bonnet Syndrome

If you have any questions about this survey or CBS please contact the Fighting Blindness research department by emailing research@fightingblindness.ie