How can MSers get involved in trials?

In this video Jules interviews Sally Fox who is a Neurology Research Nurse. The interview was filmed by

Video transcript

Jules: I’m interested to know, and I know a lot of other people will be interested to know, how can MSers get involved in trials?

Sally Fox, Neurology Research Nurse: Well, there are lots of different ways, Jules [ph]. You could, sometimes if a charity’s funding a trial there’ll be information on their webpage and a link and you can register and they will send us the details. Another way is to talk to your clinician. Very often a consultant or one of the other doctors will approach you directly and say, would you be interested in this trial. And they will have an idea of what the trial centre are looking for and the inclusion and exclusion criteria, so you would already have an idea that you would meet those. And another way that you can get involved is by actually contacting us here in the Neurology Research department at Leeds General Infirmary, you can get in touch with us directly, because in common with a lot of research centres, I keep a database of people who are interested in trials. So if you will leave me your name and date of birth and we can talk about where you are in the disease process, we can match a trial to fit you. So it might not be immediate, but obviously as new trials come in we will look at the database and we will approach patients based on what we’re looking for and check that you’re still interested and that you still meet the criteria. So, lots of different ways.

Jules: And in terms of the disease process, are you looking at people who are newly diagnosed, who’ve been diagnosed for a long time, or can you get involved at any point?

Sally Fox: Usually at any point, it depends on the trial itself. We’ve got quite a wide portfolio of trials here where I work, so some of them will be looking at newly diagnosed, some we might be looking at people across. Some of the drugs trials we’ll need people at a very specific point, but that will vary from trial to trial. So there’s usually something going on for people at various different points of the disease.

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