Share your experience of living with macular disease

There are regular opportunities for people living with macular disease to participate in research studies. The purpose of these studies is to understand more about the impact macular disease has on individuals, and on their family and friends. It can be anything from completing short surveys to taking part in focus groups or interviews. We also carry out our own surveys.

Below, you’ll find information on the research studies currently looking for participants. If you would like to volunteer for any of the studies listed, please register your interest with the contact provided.

Surveys should all be compatible with screen readers.

Surveys

Eye health experts seek your input to refresh eye research priorities

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013. 

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly. 

Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh. 

The Eye Research Priority survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in; and will be open until 9 August 2022. The survey feedback will inform the final Top 10 updated priorities across different eye sub-specialties. 

To participate in the survey, please see: https://www.surveymonkey.co.uk/r/LHL5S9R

Quality of life study of those with AMD 

If you are 50 or older with age related macular degeneration (AMD), you can help researchers at the University of New South Wales, Australia validate an extensive Quality of life survey developed specifically for people with AMD. 

The survey can be completed online or via telephone. 

Please be aware this study takes a minimum of 45 minutes to complete. 

To learn more about the study or take part, please access this link https://redcap.link/AMDQoLSurveyUK

Share your experience of living with visual impairment

Get the chance to win one of five £50 prizes and help improve the lives of people with vision impairment.

Do you have a vision impairment that can’t be corrected with glasses? RNIB wants to hear from you!

Take part in the telephone survey and help others understand what living with a vision impairment is like.

To register your interest, call 0800 009 6066 for free, or follow this link: https://forms.office.com/r/bR2pvbZXTK, and someone will call you back.

Supporting research into Charles Bonnet Syndrome 

Age-related macular degeneration is the most common cause of visual impairment in the UK. Charles Bonnet Syndrome (CBS; visual hallucinations associated with sight loss), affects up to 30% of visually impaired individuals. We aim to investigate the prevalence, psychological impact of CBS, and self-management strategies currently employed by individuals with CBS.

This survey is for anyone with visual impairment and you do not need to have CBS to take part.

You can take part here: https://cityunilondon.eu.qualtrics.com/jfe/form/SV_6YBFzdpHno1vhTU

If your organisation would like to promote a survey on this page please contact research@macularsociety.org