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Clinical Trials
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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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Clinical Trials
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Long term conditions
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Phil - Interview 11
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Phil explains what the blood pressure trial was comparing and how people were allocated at random to different groups. He felt safe because he knew th
Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.
Medical research
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Clinical Trials
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Trials involving surgery
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Merilyn - Interview 41
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Merilyn gets on really well with the research nurse and feels comfortable talking to her. That helped when she had to decide quickly whether to take p
Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.
Medical research
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Clinical Trials
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Screening, prevention other medical interventions
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Amanda - Interview 22
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Even as a doctor who likes to have lots of information, sometimes when she is severely ill she just wants to trust someone to make a decision for her.
Amanda has taken part in a trial of pro-biotic yoghurt for irritable bowel syndrome, and withdrew from a trial about early interventions to prevent diabetes. She is setting up a website for the public to design their own trials.
Medical research
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Clinical Trials
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Trials involving surgery
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Ronny - Interview 42
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Waiting to hear which group he was in was ‘a long few minutes’. Ronny hoped he’d be in the active monitoring group, but it turned out to be surgery. H
Ronny was invited by his GP to be screened for prostate cancer as part of a trial. He discovered he had cancer. He was randomised to have radical surgery (rather than monitoring or radiotherapy) and is pleased with how it went.
Medical research
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Clinical Trials
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Long term conditions
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Elvan - Interview 15
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Elvan feels you need to trust your doctors as the experts. It didn’t matter to him which group he was in.
Elvan took part in a trial of medication for hypertension. His blood pressure did not improve much, but he felt well cared for and is glad to have taken part. He has since joined another trial in the same unit.
Medical research
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Clinical Trials
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Cancer - Non-randomised studies
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Pam - Interview 21
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Pam finds her regular scans reassuring. Talking to fellow patients helps keep her spirits up, and the nurses are very encouraging. Hospital feels like
Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)
Medical research
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Clinical Trials
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Organising trials
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Lester - Interview 06
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Lester advises people to get lots of information. Now he knows more about trials he’d be more likely to take part if his doctor offered one, especiall
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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Screening, prevention other medical interventions
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Caroline - Interview 08
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Caroline might take part another time, but not in the case of serious illness. She advises others to think carefully before saying yes, ask questions,
Caroline’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.
Medical research
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Clinical Trials
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Organising trials
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Lester - Interview 06
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It comes down to whether you can trust your doctor if they tell you they do not know which treatment is best. Knowing that a trial has ethics approval
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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Long term conditions
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Sergio - Interview 37
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Sergio was not worried about whether he got the placebo or the active drug. Since the case at Northwick Park, he has been more wary of the possible ri
Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.
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