Patients have a very important part to play in research. Over a million people take part in studies and trials in the UK each year. Without them we would not have the treatments we have today and new and improved treatments would not be possible.

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Why should I get involved?

By being involved in research you can:

  • access new treatments through being on a clinical trial.
  • ensure that the patient's point of view is heard when research is being planned, carried out and reported.
  • help improve treatments and quality of life, now and for your children and grandchildren.
  • take an active role in your own care.

If that sounds like something you would like to do, what should you do next?

Learn more about opportunities

Opportunities to volunteer for clinical trials or be part of research in other ways occur regularly. The Macular Society is being approached all the time to help researchers recruit patients to test new treatments or because they want to hear the patient's point of view and experience of their condition to improve their research.

Sharing your experience 

It is important to involve patients in research and clinical trials to ensure that their point of view is heard. Researchers and companies developing new treatments may want to learn from your experiences of living with or supporting someone with macular disease. Alternatively, they may want the benefit of your experience to guide how the research is carried out.

This involvement can be though taking part in focus groups or surveys, or being a patient representative on a committee or advisory board. Many of these opportunities can be done over the phone or using a computer or tablet, and will only take an hour or so to do.

Further information on patient and public involvement in research can be found on the National Institute for Health and Care Research(NIHR) website. NIHR supports active public involvement in NHS, public health and social care research.

If this is something you might be interested volunteering for, have a look at the current research opportunities.

If you have any queries, you can contact us through research@macularsociety.org

You can also register with us through signing up to our Research participant database.

Clinical trials

Clinical trials involve testing new therapies to find out if a treatment or drug is safe and can improve or slow progression of a disease. These clinical trials provide the evidence to decide whether a treatment is approved and can be given to patients on the NHS.

To take part in clinical trials age is not a barrier, as trials rarely have an upper age limit for participants. You will normally have to have a number of tests first, to check that you meet the criteria which are set for each trial. These usually relate to your health and degree of sight loss. This process is called screening.

If you meet the criteria, you will be invited to take part in the trial. All the information you need to make a decision on whether you wish to go ahead will be provided, such as the benefits and risks to you and how many hospital visits will be required. This is called the consenting process and there will be plenty of opportunity to ask questions. You will not be rushed to make up your mind.

Here is a short video about how hospitals are operating to make taking part in clinical research safe for patients.

What trials are underway in the UK?

To explore what trials are underway in the UK at the moment on macular disease go to the NHS website Be Part of Research. It is aimed at patients and also has lots of information on how clinical research is carried out.

If you are particularly interested in clinical research underway at Moorfields Eye Hospital in London, you can register your interest with them via Research Opportunities at Moorfields (ROAM) and also see what research they have underway at the moment.

We regularly publicise opportunities to take part in research in our member magazine Sideview or on our website and social media. Signing up to our monthly e-newsletter will make sure you don’t miss the latest developments.

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Share your experience of living with macular disease link arrow

We are regularly asked to advertise opportunities for people to take part in research on what it is like to be living with macular disease and the impact it can have on friends and family. This can involve anything from completing short surveys to taking part in focus groups or interviews.

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Sign up for the Macular Society's research database to participate in studies by providing feedback on new developments, or undergoing treatment as part of a clinical trial. Our research participant database is for anyone based in the UK with macular disease, as well as healthy friends, family or volunteers.

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Patients have a very important part to play in medical research. Without them we would not have the treatments we have today and new and improved treatments would not be possible.

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Beating macular disease through funding medical research and improving the lives of those living with macular disease.