https://www.gosh.nhs.uk/our-research/taking-part-research/get-involved-in-research-and-innovation-at-gosh/taking-part-in-a-clinical-trial-at-gosh-easy-read/
Taking part in a clinical trial at GOSH - easy read
At GOSH, we put research and innovation at the heart of what we do. because research helps us learn more and improve care for patients, supporting them to feel more informed and confident.
Without you, and people like you, we couldn't carry out this research. This page explains simply what you can expect if you are considering taking part in a clinical trial.
Taking part in a clinical trial at GOSH
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When your clinical team think you may be suitable for a research project, you’ll be approached by a member of the team. They’ll explain what the research is for, and what we’re hoping to learn, usually in the form of a 'patient information sheet'.
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If you are interested in learning more, you will be invited for a screening appointment, where we'll go through everything again and you can ask any questions you might have.
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If you want to take part, we will record this as 'consent' and store it securely in your electronic medical record.
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Depending on the project, you might fill in surveys.
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You might take a familiar medicine in a new way.
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Or try an entirely new treatment
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You may come to a new area of the hospital or come more often. These are all things to consider when deciding whether you want to take part.
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Your research appointments may include surveys, blood tests, heart scans or physical examinations. This will all have been explained to you and nothing should come as a surprise.
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To create the safest, strongest research with the most reliable results, it’s important that you attend your scheduled appointments.
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But we know that sometimes changes need to be made and we’ll work with you and be as flexible as we can.
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If you ever have questions, or if you decide you no longer want to take part, you can speak to the research team at any time. You can withdraw your consent, and this will not affect your care. Participation is always voluntary.
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Trials can last one year or many. At the end of this time, the research team will look at information from everyone taking part. to understand whether the treatment worked as hoped and whether it’s safe.
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Sometimes, research studies can end suddenly, without much notice. This is called a study termination.
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If a study ends unexpectedly, the team will speak with you as soon as possible to explain what has happened and what it means for you.
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Sometimes you may be able to continue the treatment outside of the trial. If this is the case for you, the research team and your clinical team will work with you and the sponsor of the trial to explore if this is possible. This might be through an extension of the study, a compassionate use agreement, or a new trial. However, this isn’t always possible, and there is no guarantee that the treatment can continue
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We know it can be upsetting or worrying when your research journey ends, whether planned or unexpected, and we will support you with the next steps as you move out of research. At every stage, we do our best to work with you to find an outcome that is right for you.
For more information please speak to your clinical team.