EDNA is a research study. The letters stand for Early Detection of Neovascular AMD. In the EDNA study we are collecting information on how good certain tests are in detecting the first signs of development of “wet” (or neovascular) age-related macular degeneration. Wet AMD is a condition which occurs in the macula (the centre part of the retina of the eye) which can cause irreversible sight loss if not treated promptly, therefore detecting it early so that treatment can be started as soon as possible is important to help prevent sight loss.
You can find out more about wet AMD using the links in the key facts section. People with wet AMD in one eye have a higher chance of developing the condition in the other eye, but it is impossible to predict when that will happen. This is one of the reasons why both eyes are usually checked at follow-up appointments when a patient is being treated for wet AMD in one eye. In the EDNA study we are collecting information about the various tests that are done on the eye without wet AMD at each of the follow up visits. If we can determine the test that is most reliable in detecting the onset of wet AMD before sight loss develops this will help us to provide guidance to doctors. We are therefore asking all patients with a diagnosis of wet AMD in one eye to consider joining the EDNA study. The EDNA study is funded by the National Institute for Health Research HTA programme. You can find out more about taking part in research here: http://www.nihr.ac.uk/get-involved/ok-to-ask.htm
Patients who are eligible to take part in EDNA will usually be approached by the local research team at their hospital. You may be able to take part in the EDNA study if:
If you would like to take part in the study you will be recruited at your local hospital (if it is an EDNA recruiting site).
To take part you will be asked to sign a consent form to allow us to collect information on your recent visits to the eye clinic. You may also be asked to attend for a study visit to allow additional tests on your eyes to be carried out and to obtain more information from you about your health, if the records do not provide the desired amount of information. After this, your eyes will be monitored by the clinical team according to usual practice. This will involve having a number of routine tests (as mentioned above) in your good eye to look for signs that may suggest early development of wet AMD. If any of these tests show signs which might suggest wet AMD may be developing in your good eye, we will organise a fluorescein scan for you to confirm if you have wet AMD in your good eye. The fluorescein scan involves injecting a dye into your circulation and is identical to the test which would have been performed by your doctor when you were diagnosed with wet AMD in the first eye. We will follow your progress for 3 years.
If you would like any more information about EDNA, including information about taking part please contact the study office at the University of Aberdeen, 01224 438196 or by email firstname.lastname@example.org. You can find the patient information sheet by clicking on the button show more and navigating to the download documents subsection.
There are several ways in which the eye without wet AMD can be monitored in routine clinic visits. We can check sight using a chart, we can ask patients about any symptoms, we can examine the eye, we can take a scan of the back of the eye (retina and we can ask patients to complete a special chart called an Amsler chart to see if there are any small distortions beginning to develop/interfere with the patients ability to see.
What we would like to do in EDNA is to systematically collect the information from these tests to work out which of these measurements is best at picking up when wet AMD develops. In addition we would like to collect blood samples to build a valuable research database.
If you would like to be involved in EDNA, you need to be eligible and have a local hospital site that this acting as a recruiting centre. Please contact the EDNA study office and we can advise you on your eligibility and let you know if your local hospital is participating in EDNA or not (01224 438196 or email@example.com).
Queen’s University Belfast is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. Queen’s University Belfast will keep identifiable information about you for at least 10 years after the study has finished.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
You can find out more about how we use your information at https://www.qub.ac.uk/about/Leadership-and-structure/Registrars-Office/Information-Compliance-Unit/.