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Medical research
Clinical Trials
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Full list of topics
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
Subject index
Topic
Medical research
>>
Clinical Trials
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Thinking about withdrawing from a trial
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Thinking about withdrawing from a trial
Thinking about withdrawing from a trial
Medical research
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Clinical Trials
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Thinking about withdrawing from a trial
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Thinking about withdrawing from a trial
Thinking about withdrawing from a trial
Clip
Medical research
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Clinical Trials
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Screening, prevention other medical interventions
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Sue - Interview 01
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It was explained clearly to Sue that there was a trial comparing the effect of different types of information for women who’d had a previous caesarean
Sue’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial looking at different types of information and decision aids about birth choices for women who had already had one caesarean. She was pleased to be involved.
Medical research
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Clinical Trials
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Cancer - Non-randomised studies
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Tom - Interview 14
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He knew he could stop if the side effects became too bad. He felt the staff explained it well, but not everyone wants as much information as he did.
Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.
Medical research
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Clinical Trials
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Screening, prevention other medical interventions
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Rosamund - Interview 18
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Rosamund supports medical research, but it depends how invasive the different interventions are. She felt having ovarian screening could be uncomforta
Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.
Medical research
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Clinical Trials
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Not taking part in a trial
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Elizabeth - Interview 27
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When she told the consultant her decision, he seemed angry, which made her feel vulnerable and upset. She worried that if she had dropped out after ra
Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.
Medical research
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Clinical Trials
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Cancer - Non-randomised studies
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Tom - Interview 14
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Tom encourages other patients to think about taking part in a trial if it is offered. You can always withdraw if there are problems, and you will have
Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.
Medical research
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Clinical Trials
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Not taking part in a trial
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Elizabeth - Interview 27
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It’s important to remember you can pull out at any stage and it won’t affect your care. She worried that it might affect her own care but in fact it d
Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.
Medical research
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Clinical Trials
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Screening, prevention other medical interventions
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Sabiha - Interview 19
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It never occurred to her to drop out of the breast screening trial. She likes to see things through and wouldn’t want to do anything to damage the tri
Sabiha took part in a trial of breast screening for younger women (under 50). More recently she volunteered for a trial of cholesterol-lowering drugs but was not eligible because her cholesterol level was too low.
Medical research
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Clinical Trials
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Long term conditions
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Kate - Interview 13
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Kate advises people to think carefully about the commitment involved before they agree. If you are going to pull out, do it as early as possible for t
Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.
Medical research
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Clinical Trials
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Long term conditions
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Angela - Interview 23
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Angela had some distressing side effects. She told staff but kept going because she had made a commitment and wanted to honour it. She knew it was onl
Angela was diagnosed with Parkinson’s disease after taking part in a trial on nerve conduction. She has since been in a randomised trial of different drugs for Parkinson’s and would happily take part in another trial, despite having had side effects.(Angela is also on our Parkinson’s disease site, Interview 10).
Medical research
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Wendy - Interview 02
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It was always made clear she could withdraw at any time. She thought about it because of the side effects, but felt it would have been a waste of time
Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.
Medical research
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Clinical Trials
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Long term conditions
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Harry - Interview 07
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After the dose of the drug was increased, Harry had bad side effects. He almost gave up, but the senior clinician explained what had happened and enco
Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.
Medical research
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Clinical Trials
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Long term conditions
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David - Interview 34
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After he’d started the trial, there were scare stories about the type of treatment being tested. He felt it was too late to stop, but might have thoug
David volunteered for a placebo-controlled trial of a new treatment derived from mouse DNA to improve asthma symptoms. He later discovered he was in the group taking a lower dose of the treatment, but he would not have minded being in the placebo group.
Medical research
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Clinical Trials
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Long term conditions
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Danny - Interview 26
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Danny stopped taking the trial tablets when she developed side effects, as she thought might happen. She felt staff reacted as if ‘I was no good to th
Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.
Medical research
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Clinical Trials
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Long term conditions
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Kate - Interview 13
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Occasionally Kate and her husband found keeping appointments ‘a bit of a chore’, especially when he realised he must be in the placebo group, but they
Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.
Medical research
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Clinical Trials
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Long term conditions
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Sarah - Interview 38
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Sarah found it quite inconvenient continuing the injections even when she was on honeymoon – perhaps if she had been braver she might have said no ear
Sarah volunteered for a placebo-controlled trial of a drug intended to help women at risk of osteoporosis. It involved daily injections and eventually she dropped out of the trial. (You can see Sarah talking more about her experiences on the healthtalkonline site osteoporosis, Interview 27).
Medical research
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Clinical Trials
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Long term conditions
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Sarah - Interview 38
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She withdrew from the trial when a family member was taken into hospital. The smell of the injections started to upset her because it reminded her too
Sarah volunteered for a placebo-controlled trial of a drug intended to help women at risk of osteoporosis. It involved daily injections and eventually she dropped out of the trial. (You can see Sarah talking more about her experiences on the healthtalkonline site osteoporosis, Interview 27).
Medical research
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Celia - Interview 12
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Celia wishes she had withdrawn from the trial. She has since found that her system seems to be unusually sensitive to radiotherapy, and she believes t
Celia took part in a randomised controlled trial comparing different periods of radiotherapy for lymphoma. She was would have preferred the shorter course; she was allocated to the longer course but took part anyway.
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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Ronny was prepared to let the computer decide which treatment he would have for prostate cancer, but if he had been allocated to radiotherapy he would
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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Screening, prevention other medical interventions
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Amanda - Interview 22
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Amanda was surprised to find she was eligible for a diabetes prevention trial. She withdrew because she was annoyed that staff told her GP she was at
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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Cancer - Non-randomised studies
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Anthea - Interview 39
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Anthea completed a 12-month trial of interferon. When the melanoma returned, she joined a trial of Taxol (paclitaxel), but was advised to stop early b
Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.
Medical research
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Clinical Trials
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Cancer - Non-randomised studies
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Anthea - Interview 39
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Anthea knew she could withdraw if she had bad side effects, but in fact they were generally mild. Only once at the beginning she had to stop for a wee
Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.
Medical research
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Clinical Trials
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Long term conditions
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Harry - Interview 07
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Trials are designed to find out things that don’t work. Doctors are there to help, and if you have any problems you should tell them straight away and
Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.
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 was told grapefruit, evening primrose oil and antibiotics can interact with the trial drug (lapatinib). She had bad side effects when she took an
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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Screening, prevention other medical interventions
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Leslie - Interview 43
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Leslie was taken off the trial by hospital staff when he became so ill he was rushed into hospital by ambulance.
Leslie took part in a placebo-controlled drug trial of rofecoxib (Vioxx) for prostate cancer prevention. He became extremely ill, but doctors monitoring his progress did not pick up his symptoms. He took the drug company to court, and won compensation.
Medical research
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Clinical Trials
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Not taking part in a trial
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Charles - Interview 29
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He did not mind the idea of a placebo, and would have been curious to see if he was susceptible to the placebo effect. He might have dropped out if he
Charles volunteered for two trials, but ended up unable to take part in either of them. The first time he did not meet the eligibility criteria. The second time was because of an administrative mix-up about his age, and he feels it was not well handled.
Medical research
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Clinical Trials
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Long term conditions
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Harry - Interview 07
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Harry had two unexpected drug interactions when he started taking other drugs alongside the trial drugs. He doesn’t remember anything about it in the
Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.
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