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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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Funding and publishing trials
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Funding and publishing trials
Funding and publishing trials
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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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Fenella describes a trial testing the effectiveness of a computerised behavioural therapy programme for managing anxiety disorders, compared to conven
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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Not taking part in a trial
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Hazel - Interview 05
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It is vital that trials are well designed and build on existing knowledge, and that they focus on things which really matter to patients.
Hazel learnt she had breast cancer (DCIS) after screening in 1991. After surgery she was asked to be in a trial comparing no further treatment with radiotherapy, tamoxifen, or radiotherapy and tamoxifen combined. She declined to take part. (You can see Hazel talking more about her experiences on the Healthtalkonline site on Breast cancer screening, Interview 17 & DCIS, Interview 26).
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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Marie - Interview 25
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Marie did not realise at first the doctor talking to her about the trial worked for a drug company and that the drug company was running the trial, no
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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Trials involving surgery
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Ronny - Interview 42
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Ronny agreed to be screened for a prostate cancer trial because he thought it might help his brother who had the condition. He never imagined he too w
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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Not taking part in a trial
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Marie - Interview 25
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She didn’t like the idea that the trial could be stopped whenever they had enough data. She would have felt like a guinea pig.
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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Not taking part in a trial
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Marie - Interview 25
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The information leaflet was complicated and reading it made Marie angry. She was worried about side effects, the fact that the drug might be withdrawn
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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Screening, prevention other medical interventions
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Joanna - Interview 04
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It should be easier for people to get the results of trials, and researchers should make sure they build in the costs of providing good feedback.
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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Screening, prevention other medical interventions
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Joanna - Interview 04
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Joanna argues for more public debate about the trade-offs between side effects and gains in survival. Patients, government, doctors and scientists hav
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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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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Organising trials
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Lester - Interview 06
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Drug companies will of course research products in order to make money, but the UK has a good system of regulation. Lester is more worried about wheth
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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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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Screening, prevention other medical interventions
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Tony - Interview 36
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Tony thinks there are conspiracy theories about the role of the pharmaceutical industry, but he keeps an open mind and does not begrudge them their pr
Tony took part in a double-blind, placebo-controlled trial of Viagra (sildenafil) for erectile dysfunction following a prostate operation. He was in the placebo arm but was given Viagra after the trial ended. (Husband of Pam, Interview 21).
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 worries that commercial trials may suppress ‘negative’ findings. Good research is not cheap, and she feels it should be nationally funded, with
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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Screening, prevention other medical interventions
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Amanda - Interview 22
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Amanda was a member of a research ethics committee and was surprised it was not seen as not part of their role to insist on full publication as a cond
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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Long term conditions
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Kate - Interview 13
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Kate’s charity worked on a study with a drug company, and they found it really difficult to get the results published. She felt the reviewers were pre
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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Organising trials
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Lester - Interview 06
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It takes a long time for most trial results to be published. Sometimes when results seem disappointing, researchers may want to carry on, hoping a tre
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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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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Cancer - Non-randomised studies
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Julian - Interview 33
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Julian argues that basic biology research is essential, and may come up with more targeted ways to tackle cancer, rather than our current ‘blunderbuss
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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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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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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Funding and publishing trials
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Funding and publishing trials
Funding and publishing trials
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