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

Injection delays for patients with wet AMD and other treatable macular conditions

The Macular Society is concerned about reports of delays to treatment patients are experiencing across the UK. We are devastated to hear that people may be losing their sight because they are not getting their treatment on time and are determined to prevent irreversible sight loss.

We desperately need to address this pressing issue and are calling on you to help us understand the scale of the problem, so we can continue to lobby for the change that is needed.

We would be extremely grateful if you could support us by completing our survey and letting us hear more about your experiences, or those of a family member.

Take part in the treatment delays survey

Survey into digital exclusion on those with macular disease

OKKO Health is a medical technology company based in Bristol. We are developing an app for monitoring eye health, specifically focusing on the home-monitoring of Age-related macular degeneration (AMD). We are always striving to improve our app and understand more about the people who will benefit from using it.

As more of our world moves online, a lack of internet access or low digital literacy can have a negative impact on a person’s life. As part of our research, we are looking into the extent and the impact of digital exclusion on people living with macular conditions.

We have created the following short survey to gather some initial information on this subject, and we would love as many responses as possible to help with our research into this area. Your responses are completely anonymous and no personally identifiable information is asked for or recorded. By completing the survey you are consenting to take part in the research. The information you give us will be treated confidentially.

The survey consists of a maximum of 9 questions (sometimes less depending on your answers), and will only take around 5 minutes to complete.

If you would like to join our volunteer user tester group for the app, please email support@okkohealth.com for more information.

Take part in the Okko Health digital exclusion survey

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.

Take part in the CBS research survey

Research study to assess techniques that may help reduce visual hallucinations

Do you have visual hallucinations and have been diagnosed with an eye disease?

Royal Holloway University are running a research study to assess techniques that may help reduce your visual hallucinations.

If you are interested in taking part or want more information, please contact the research team on cbs.study1@gmail.com

Eligibility criteria:

18 years or over
From the UK
No neurological or cognitive impairments
Loss of vision from any cause with visual hallucinations

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