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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
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Clinical Trials
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Feedback of trial results
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Feedback of trial results
Feedback of trial results
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Medical research
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Clinical Trials
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Not taking part in a trial
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Polly - Interview 09
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When people are sick they may not want choice. They may want their doctor to be honest about uncertainties, but also to advise them what’s best.
Polly was invited to be in a trial comparing tamoxifen against a placebo for breast cancer in the 1990s. She decided not to take part, because she felt there was already good evidence to support the use of tamoxifen.
Medical research
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Clinical Trials
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Screening, prevention other medical interventions
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Joanna - Interview 04
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Joanna’s husband was in a trial because he would do anything to help his leukaemia. She took part in a screening trial for altruistic reasons. People
Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.
Medical research
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Clinical Trials
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Not taking part in a trial
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Lesley - Interview 44
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When Lesley fractured her heel, she wanted to be told by a doctor what to do. She felt being in the trial would make her responsible for choosing, eve
Lesley slipped and fractured her heel. She was invited to take part in a trial comparing surgery with letting the bones heal naturally. She decided not to take part because she wanted the consultant to make a decision about treatment.
Medical research
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Clinical Trials
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Trials involving surgery
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Alex - Interview 45
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He doesn’t remember being told if he would receive the results. He asked to see a copy, but not everyone would want to.
Alex fractured his heel in 2007. He agreed to take part in a trial comparing surgery with letting the bones heal naturally. He was randomised to the group having surgery, and his heel is slowly recovering.
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 would like to know how the trial is going, but she hasn’t asked. She doesn’t think she was promised a copy of the final results.
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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Cancer - Non-randomised studies
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Anthea - Interview 39
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Anthea always asks lots of questions about how the trial is going, but that’s a personal choice to have lots of information. She’s not sure if she wou
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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Kate - Interview 13
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The research nurse shared preliminary results with them and told them about presentations he was giving, to keep them informed and engaged.
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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Cancer - Non-randomised studies
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Julian - Interview 33
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Julian opted to get copies of any letters to his GP, and asks for updates on his own test results. He’d like more opportunities to meet other patients
Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.
Medical research
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Clinical Trials
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Not taking part in a trial
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Marie - Interview 25
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Marie’s GP spent time discussing her concerns about the trial and her consultant contacted the trial on her behalf to say she was not happy to take pa
Marie was diagnosed with chronic lymphocytic leukaemia in 1992. She was recently invited to take part in a clinical trial of a new monoclonal antibody. At first she thought she would take part but after reading all the details decided against it.
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’s message to others asked to take part in a trial is to look at it seriously and see if you are able to help.
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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Merilyn - Interview 41
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Being in a trial is a personal decision, but Merilyn encourages people to consider it. Medicine can only make progress if people volunteer.
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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Not taking part in a trial
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Polly - Interview 09
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Polly wonders if we could run trials where people could choose a treatment rather than being randomised without biasing the results.
Polly was invited to be in a trial comparing tamoxifen against a placebo for breast cancer in the 1990s. She decided not to take part, because she felt there was already good evidence to support the use of tamoxifen.
Medical research
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Jayne - Interview 03
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Jayne explains the need for randomisation to have comparable groups of people in each arm of the trial.
Jayne had breast cancer aged 33. She wanted to join a clinical trial but her consultant was not interested, so she transferred to another hospital and took part in a trial comparing tamoxifen with tamoxifen plus goserelin (Zoladex).
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