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

Invitation for patients and supporters to participate in a survey about dry age-related macular degeneration/geographic atrophy (UK) 

Modus Outcomes, a scientific research company, is conducting a global survey for the MOSAIC study. The study explores people’s experiences with geographic atrophy (GA), which is also known as advanced dry age-related macular degeneration (AMD).

The purpose of the survey is to understand how GA/advanced dry AMD impacts daily life for people with GA and those who help them.

People aged 60 or older living with GA/advanced dry age-related AMD and their main, non-paid supporter (unpaid person who cares for a person with GA/advanced dry AMD or whose life is affected by a person with GA/advanced dry AMD) living in the US, UK, Australia, Germany, and France are invited to participate.

Patients and supporters who qualify will be asked to complete a 30 – 45 minute electronic or telephone survey; participants will be compensated. No medical treatment will be provided as part of this study.

If you or someone you know may qualify (patients or supporters) please email: contact@global-patients.com or call 01603 577 062.

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