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Joining the research effort

Many research studies could not take place without the participation of people living with inherited sight loss.

Whether it be a simple blood test to provide a DNA sample through to the significant commitment of taking part in a clinical trial, these contributions all help researchers make progress towards treatments.

Clinical trials

Treatment development is a very lengthy process, which starts in the laboratory with basic science work to establish how disease processes might be influenced to slow or stop their progression. Promising approaches may then proceed to tests in cell or animal models; if they demonstrate clear potential and safety, researchers can then move on to clinical trials in human volunteers.

The clinical trial process alone takes several years as it has up to four stages, known as ‘phases’, with each phase involving progressively larger numbers of patients. The early phases establish safety and appropriate dosages, whereas the later stages are a more rigorous test of efficacy, although the potential for dangerous side effects to appear is a constant consideration.

Results from successful clinical trials are essential for a new treatment to be made generally available. The trials must demonstrate that the treatment does not have unacceptable side effects, and that it is clearly of benefit to those living with the disease.

All clinical trials have strict guidelines about who can take part. Criteria for inclusion or exclusion from the trial usually include factors such as age, stage of disease, and possibly gene mutation. These criteria are essential to ensure that the trial produces reliable results and to help maintain participant safety. Retina UK cannot influence who can take part in clinical trials, even if we are supporting the researchers involved.

I chose to participate in medical research because I know that the project I’m involved in has the potential to directly impact me and others like me.
Sumaira Latif, research participant

Webinar: Dr Salwah Rehman, Clinical trials process

The clinical trials process

Join our Lived Experience Panel

Get involved in representing the inherited sight loss community through activities like focus groups, surveys and research projects.

Find out more

Finding out about current clinical trials

How can I find out about taking part in current clinical trials?

There are not any official ways to register your interest in taking part in trials or other types of research study, although some research centres may have their own databases – ask your ophthalmologist. However, all credible clinical studies will be registered on a publicly accessible online database.

The registry for studies being conducted in the UK is called the NIHR UK Clinical Trials Gateway.

There are other public registries or lists of trials that may include UK centres:

  • Europe – EU Clinical Trials Register
  • USA – National Institutes of Health (NIH) Clinical Trial Registry Please note that this website is not regulated, even though it is hosted by a US government institution. If you are considering joining a trial found on clinicaltrials.gov, always discuss it with your usual ophthalmologist or family doctor first to ensure that it is legitimate. Please also note that participation in a genuine clinical trial will never require payment.

If you are interested in taking part in a clinical study you will need a referral from your doctor and you should discuss the study you are interested in with them to understand:

  • Whether you have the form of the condition being studied
  • What the purpose of the study is (i.e. not all trials are testing new treatments)
  • Whether you meet the enrolment criteria
  • Whether you can make the time commitment to take part

After you have been referred, the research team would contact you if there is an appropriate opportunity for you to take part in the study, but will not be able to guarantee an opportunity to be enrolled.

A credible clinical trial will never ask you to pay to take part.

Eye donation

Many donations to hospital eye banks are used to save sight through tissue transplants, but a significant number are also used by researchers to increase understanding of retinal conditions. Eye tissue affected by inherited retinal disease can be very useful to scientists and is gratefully received.

Donation of eye tissue for the treatment of others living with sight loss is coordinated by NHS Blood & Transplant. If you would like to know more about how tissue donation can help others, visit nhsbt.nhs.uk/what-we-do/transplantation-services/tissue-and-eye-services/ . However, please note that donation of eye tissue to a living recipient may be restricted if the donor has eye disease, and this will be handled on a case-by-case basis.

With the appropriate permission, NHS Blood & Transplant may also pass some tissue on to research centres.

If you have an inherited retinal condition and would specifically like your eye tissue to be used by researchers investigating these diseases, the Oxford Cell & Tissue Biobank may be able to arrange this, even if you do not live near Oxford.

If you would like to donate your eye tissue after you have passed away, it’s a good idea to discuss your wishes with your family and friends so that they can be prepared to make the necessary arrangements when the time comes. To benefit a living recipient, the donation will need to be made within 48 hours, and there is also a slightly longer limit on the time during which a research donation can be collected.

Support us

Each and every contribution makes a difference, and our friendly fundraising team would love to hear from you if you have a question or want to get involved. Just call us on 01280 815900 or email fundraising@RetinaUK.org.uk.