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
Share your experience of treatment delays
The Association of Optometrists (AOP) has launched a survey to understand more about your experiences of eye care over the last two years.
The AOP wants to understand more about the treatment or care you receive, including whether you have faced any unnecessary delays.
The survey should take no longer than five minutes to complete online and will help AOP to speak up for patients to the Government and the NHS.
You can take part here
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
Survey looking at a new way to deliver timely eye appointments
A team at UCL have created a 20-minute survey to help explore people’s preferences around their regular check-ups. The group are looking at new ideas for diagnostic hubs to reduce the queues at eye clinics. They are looking for the views of those using eye clinics for regular eye checks. If you have questions or would prefer to complete the survey over the phone contact 0800 783 1775 or email helpline-QH@iqvia.com
You can take part here: https://qhweb.co.uk/ucldce
Charles Bonnet Syndrome, Sleep and Physical Activity Levels
A student at Anglia Ruskin University is looking into how sleep and physical exercise may impact hallucinations associated with Charles Bonnet Syndrome (CBS).
They are looking for people with CBS to take part in a 10 minute survey here: https://angliaruskin.onlinesurveys.ac.uk/charles-bonnet-syndrome-peandsleep
If your organisation would like to promote a survey on this page please contact research@macularsociety.org