Taking part in clinical research

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.

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 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 has lots of information on how clinical research is carried out.

We also publicise opportunities in our member magazine Sideview or on our website and social media.

Key trials underway at the moment in the UK and across the world:

AMD

FOCUS, HORIZON and EXPLORE - gene therapy for dry AMD
PINNACLE - improving our understanding of AMD progression
FENETRE - community care in wet AMD
LIGHTSITE - Valeda Light Delivery system for dry AMD
OAKS - APL-2 for dry AMD
ARCHWAY - port delivery system for wet AMD
GATHER - Zimura for dry AMD

Stargardt disease

STARTT - remofuscin
Zimura