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* 1. Are you male or female?

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* 2. Are you a

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* 3. What is your age?

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* 4. How do you describe your ethnic origin?

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* 5. Have you taken part in a research study (related to your heart condition) before?

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* 6. Where you able to take part in the initial design of the research study?

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* 7. Did you understand the purpose of the research?

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* 8. Were your ‘out of pocket expenses’ fully covered?

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* 9. Were the results of the research shared with you?

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* 10. I fully consented to participating in the research

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* 11. I had a named person to talk to if I had any questions or was worried about any of the aspects of the research

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* 12. Please rate the following statements as follows

  Strongly disagree Slightly disagree Neither agree nor disagree Slightly agree Strongly agree
When I took part in research I felt valued and needed
It was a frustrating experience having to have more tests
Taking part in research was very inconvenient, with lots of wasted time waiting for more tests
I could see personal benefits to participating in the research
Everything was fully explained to me, who the research was for, what was being measured and how the results would be used
Taking part in research was a positive experience
I was worried that someone might discover something negative about my own heart condition
I felt that I was being treated as an equal partner in the research rather than as just another patient

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* 13. Any other comments about your experiences of participating in research

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* 14. Generally who do you think gains the most from research? Please rate from 1 to 4 with 1 being the highest

  1 2 3 4
GUCH patients
Academic researchers
Pharmaceutical (drug) companies
NHS

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* 15. I prefer not to take part in research because (Please mark the following statements as either true or false)

  True False
I have read or seen negative articles about research in newspapers or on TV
I was ‘poked and prodded’ so much as a child that I just don’t want any more tests unless they are absolutely necessary
I am worried that researchers might find out something else that’s ‘wrong’.
I haven’t got the time.
I am worried about how the results will be used.
I am concerned that my personal information won’t be kept confidential
I think that it might end up costing me money (car parking charges etc.) and this won’t be covered.
I just don’t see the point. It’s hard to see the benefits of research for GUCH patients.

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* 16. I’d be much more willing to participate in research if (Please mark the following statements as either true or false)

  True False
I understood the potential benefits of the research
I knew that I wouldn't have to spend a long time waiting in hospital clinics for tests related to the research
I received some sort of acknowledgement, thank you letter, certificate etc. for taking part
I could take part in the initial design of the research
The research took place away from a hospital setting
I was paid to take part
I knew I’d be given the results when the research was completed

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* 17. In your own words please complete the following statement

What really matters to me is that researchers ………

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