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Finding out about a trial :
What are clinical trials and why do we need them?
Different types of clinical trial
Being asked about taking part in a trial
Information and questions
Difficulties finding a trial to join
Deciding whether to take part – risk and benefits :
Reasons for wanting to take part – personal benefit
Reasons for wanting to take part – helping medical science
Deciding not to take part
Thinking about withdrawing from a trial
Why people may not be eligible to join a trial
Being in a trial :
Feelings about being allocated (randomised) to a treatment group
Feelings about being in a placebo-controlled trial
Blinded trials
Non-randomised trial designs and other studies
Side effects and queries
Time commitment, money and other practical issues
Appointments, monitoring, questionnaires
Communication between different health professionals
At the end of a trial :
Feelings when a trial ends
Feedback of trial results
Other issues :
Attitudes to taking part in another trial
Funding and publishing trials
Public awareness and involvement
Under-researched topics/priorities for other research
Messages to other people
Messages to professionals
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Clinical Trials
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Organising trials
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Lester - Interview 06
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In the trial Lester chaired it was hard to approach patients with CJD (Creutzfeldt-Jakob Disease) in the short time between diagnosis and death.
Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.
Medical research
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Clinical Trials
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Mental health trials
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Fenella - Interview 20
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Looking back, Fenella feels one benefit of being in the trial was having access to staff who were expert and motivated to find the very best treatment
Fenella took part in a randomised trial of partial hospitalisation compared to standard community treatment for borderline personality disorder. Results showed the group she was in (partial hospitalisation) had better outcomes.
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