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Table 6 Participants’ Beliefs regarding Basic Science Research

From: What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study

Priority Example quotes
Finding a cure F: Well curing it is important; it is obviously going to affect a lot of people if you can actually cure it, because there’s always a chance of it coming back. So to cure it would definitely be the best. (England 11–15)
Understanding the genetic basis of conditions F: But when I asked them they said there could be a genetic link but then my mum doesn’t have it, and my dad doesn’t have it, no one, it doesn’t run in the family. So where did it come from? (England 11–15)
Understanding the relationship between a patients’ genetics and their treatment F- I’d agree with that because they will put on medicine that you may get side effects or something like that, and then you complain about them and they say ‘oh they are just headaches. So even if they could look at the person, no one’s ever looked at my genetics, even if they did that little bit of extra research into their patient. (England 16–24)
Development of predictive tests F- So if there was a test to find out how much it was going to progress, and also which drugs work best with a young person. (England 11–15)
  1. F Female, M Male; Country focus group undertaken in; age group