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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
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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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Gill - Interview 10
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Doctors may want to protect their patients after breaking bad news, but they should not be afraid to ask them about research. Patients may want a chan
Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.
Medical research
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Clinical Trials
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Not taking part in a trial
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Gill - Interview 10
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Gill knows that it is NHS policy to offer everyone the opportunity to be involved in research, but there is a long way to go before this becomes reali
Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.
Medical research
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Clinical Trials
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Not taking part in a trial
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Gill - Interview 10
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She assumed her local hospital would have plenty of research going on she could join, but when she asked there was nothing suitable for her.
Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.
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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She knows some people who are not interested in trials. She thinks it depends whether the hospital you go to has an active research culture or not.
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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Cancer - Non-randomised studies
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Tom - Interview 14
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Tom believes a public website listing available trials and eligibility criteria would be a good idea. But he knows some doctors disagree, and thinks s
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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Mental health trials
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Fenella - Interview 20
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You can find information about research on the internet, from your local academic department, or your GP or specialist. She asks professionals, “If yo
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.
Medical research
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Clinical Trials
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Mental health trials
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Anton - Interview 28
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Researchers could do more to make it easy for people to volunteer. It’s off-putting when you ring to ask about a trial and you get an answerphone.
Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.
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 could only get lapatinib through an open-label expanded access study. She’d have joined a randomised trial if necessary, but feels NICE should app
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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Not taking part in a trial
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Marie - Interview 25
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She had heard bad things about commercial trials. She thought a trial in an NHS hospital would be run by the NHS and was worried to discover it was ru
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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Long term conditions
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Kate - Interview 13
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There are strict regulations in place to protect patient safety, so the risk of something going seriously wrong in any trial is very small. Lessons ha
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 drugs and radiotherapy - randomised trials
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Celia - Interview 12
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Celia argues for more government research funding. She feels drug companies tend to fund research into small refinements to existing treatments, so th
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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Cancer - Non-randomised studies
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Julian - Interview 33
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The costs of developing new drugs are high, so Julian thinks investment from drug companies is inevitable. But it worries him that there are few incen
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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Screening, prevention other medical interventions
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Caroline - Interview 08
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Caroline argues that the research agenda is partly driven by the interests of drug companies and popular charities. As a result preventive medicine an
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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Not taking part in a trial
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Polly - Interview 09
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Polly believes we need more evidence about the effect of alternative therapies. The NHS is under pressure to provide them because people like them, bu
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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Leslie - Interview 43
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Leslie thinks there is too much secrecy around drug company trials, and feels they are more interested in profit than safety.
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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Screening, prevention other medical interventions
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Joanna - Interview 04
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The 60th anniversary of the NHS could have been an opportunity to tell the story of why medical research is valuable and what’s been achieved in the l
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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Gill - Interview 10
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Doctors may want to protect their patients after breaking bad news, but they should not be afraid to ask them about research. Patients may want a chan
Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.
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