Being invited to take part in transient ischaemic attack (TIA) research

Some of the people we talked to had taken part in a research study looking at stroke and TIA. This project is what is known as a ‘cohort study’, in which a group of people with a particular condition or set of characteristics are followed up long term. In this case, everyone who has a suspected stroke or TIA from a group of GP practices is invited to be part of the research, and is then referred to a research clinic. The results have already changed guidelines around the world on how patients with TIA are investigated and treated, having shown that the risk of major stroke in the few days after a TIA is very high; that those individuals at highest risk can be identified using a simple risk score; and that emergency treatment reduces this early risk of major stroke by as much as 80%*. Here people talk about how they were approached and what information they were given. Most were referred by their GP. Several people commented on how fortunate they felt to be offered this opportunity. Most people talked about a mix of reasons for taking part, including possible benefit to themselves as well as helping medical science and other patients in future.

When Phillip saw his GP, she explained the practice was part of a research study. As a researcher…

Age at interview 72

Gender Male

Age at diagnosis 71

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Anne had never been a research participant before. She felt lucky to be asked, and hoped it would…

Age at interview 79

Gender Female

Age at diagnosis 72

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Johns GP asked if he would like to take part in a research programme. He was happy to do so, and…

Age at interview 59

Gender Male

Age at diagnosis 58

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A few people were asked to take part in the research through a different route. When Brian had a TIA he was taken to hospital by ambulance so he didn’t see his GP at first.

Brian was approached about taking part in a research study while he was on the ward. He took part…

Age at interview 77

Gender Male

Age at diagnosis 77

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Sometimes research studies need to include comparisons with people who do not have the condition – these volunteers are known as ‘controls’. Other family members may be asked if they would like to take part as controls.

Brians wife Rosemary agreed to take part as a healthy volunteer or control in the research…

Age at interview 73

Gender Female

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Generally people felt well-informed about the nature of the study, and having time to ask questions was an important benefit.

Angus got plenty of information about the research he took part in, and he and his family could…

Age at interview 61

Gender Male

Age at diagnosis 60

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Several people commented that there had been benefits to them they had not thought about beforehand, including more intensive monitoring and a feeling that the research staff were more relaxed and able to spend more time talking to you than most NHS staff (see also ‘Taking part in TIA research‘).

Anne encourages others to think positively about it if an opportunity to take part in research is…

Age at interview 79

Gender Female

Age at diagnosis 72

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For Vernon, personal benefit played no part in his decision to take part. He commented, ‘It’s common sense, isn’t it? I mean, if I can be of any help to anybody I’m only too pleased to do it. I can’t think of any other reason.’

*Rothwell PM, Giles MF, Chandratheva A, et al. Effect of urgent treatment of transient ischaemic attack and minor stroke on early recurrent stroke (EXPRESS study): a prospective population-based sequential comparison.
The Lancet [Early Online Publication, 9 October 2007]