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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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
Wendy felt well-informed and the decision was left entirely up to her. She had two weeks to go away and think about it - more than that might have bee
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
She thought being in the trial would mean she would be really well looked after by experts. But after agreeing to take part she never saw the professo
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
It was an anxious time waiting to hear which trial group she was in. She’d have felt cheated if she had been in the control group, but would have stay
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
It might have been useful for her GP and the Macmillan nurses to know more about possible side effects, but trial staff told her to come back to them
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
She experienced many of the side effects she was told might happen. It was a worrying list, but she’s glad she was well prepared before agreeing to ta
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
Wendy was asked to take part in a year-long trial of chemotherapy for bowel cancer. She thought it might be ‘too selfish’ to take part if it affected
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
When the trial finished, she felt vulnerable and worried whether the cancer would return. Having six months extra treatment in the trial felt like ‘an
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
Wendy would like to have been told in advance that she wouldn’t see the professor every time. There was little continuity of care and staff always see
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Jayne - Interview 03
>>
Jayne did not mind being in the control group, even though the new treatment tested in the trial has now become the standard treatment, so she was not
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).
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Remembering to take the trial tablets is quite daunting. Pam has to save the empty packets and take them back, though that doesn’t prove she actually
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Shirley - Interview 16
>>
The sentinel node biopsy involved little apart from being injected with a dye which showed through her skin for some time after. She is not sure she w
Shirley was invited to join a surgical trial of sentinel node biopsy after she had been diagnosed with breast cancer (DCIS, ductal carcinoma in situ). (You can read more of Shirley’s experience on the healthtalkonline DCIS site, Interview 22).
Medical research
>>
Clinical Trials
>>
Not taking part in a trial
>>
Polly - Interview 09
>>
She would probably have taken part if tamoxifen had been available only through a clinical trial. She is not against placebo-controlled trials in prin
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Jayne - Interview 03
>>
Jayne explains that blinding to patients and staff is not always possible, but you can still make sure the person analysing the results is blinded to
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).
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Polly - Interview 09
>>
Polly decided not to take part in a placebo-controlled trial of tamoxifen because she felt there was already enough evidence it worked for breast canc
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Polly - Interview 09
>>
Polly never felt she got a straight answer about why the trial was needed and whether the doctor would have offered her tamoxifen outside the trial. A
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Jayne - Interview 03
>>
Jayne is strongly committed to the value of research and wanted something good to come out of her illness – not for herself but for others, including
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).
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Shirley - Interview 16
>>
The surgical study Shirley was invited to join was to check that local surgeons could perform a particular procedure accurately. She had to have surge
Shirley was invited to join a surgical trial of sentinel node biopsy after she had been diagnosed with breast cancer (DCIS, ductal carcinoma in situ). (You can read more of Shirley’s experience on the healthtalkonline DCIS site, Interview 22).
Medical research
>>
Clinical Trials
>>
Not taking part in a trial
>>
Gill - Interview 10
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Jayne - Interview 03
>>
When Jayne learnt she had breast cancer in 1994, she knew it was unclear which treatment was best and asked to join a trial. The consultant was dismis
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).
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Pam has breast cancer which spread to her bones and liver. Taking a trial drug seemed‘a lifeline’ she could not refuse, despite serious side effects.
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
Anthea was determined to give herself the best possible chance of beating cancer after other treatments had failed, but even if the trials don’t help
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
>>
Clinical Trials
>>
Trials involving surgery
>>
Ronny - Interview 42
>>
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Amanda - Interview 22
>>
She has been trying to set up a trial on the internet to test if selenium supplements prevent cancer.
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Rose - Interview 17
>>
Rose volunteered to ‘give something back’. She knew both treatments were tried and tested, and was happy to be in the control group. But she would hav
Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
Testing treatments that target people with cancer who have the BRCA genetic mutation may be of direct benefit to his daughters. Julian wants to help t
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
It might have been useful for her GP and the Macmillan nurses to know more about possible side effects, but trial staff told her to come back to them
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
The doctors explained very honestly their uncertainty about the treatment and the risks. Careful monitoring is important.
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
It is important that trial results are explained to participants, whether they are positive or negative. People will find out one way or another, and
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Pam would like to see more research into the needs and experiences of family carers. Her husband has had to take on a lot while she has been coping wi
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
Anthea describes what a Phase 1 trial is. No-one knows what the side effects will be and whether it will work, but she is very closely monitored.
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
When the trial finished, she felt vulnerable and worried whether the cancer would return. Having six months extra treatment in the trial felt like ‘an
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Celia - Interview 12
>>
Celia saw an advert to join the Consumer Liaison Group of the National Cancer Research Institute. She applied, and sits on the complementary therapies
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
More research is needed to understand the impact of involving consumer representatives in designing trials and setting priorities.
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Judith - Interview 24
>>
A relative with multiple sclerosis was upset to find he’d been in the placebo group in a trial. She would not like to be in a placebo-controlled trial
Judith agreed to take part in a randomised trial comparing different intervals of chemotherapy treatment for non-Hodgkin’s lymphoma. She was allocated to the standard treatment and responded well.
Medical research
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
When the trial finished, she felt vulnerable and worried whether the cancer would return. Having six months extra treatment in the trial felt like ‘an
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
Wendy was asked to take part in a year-long trial of chemotherapy for bowel cancer. She thought it might be ‘too selfish’ to take part if it affected
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
It might have been useful for her GP and the Macmillan nurses to know more about possible side effects, but trial staff told her to come back to them
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
She thought being in the trial would mean she would be really well looked after by experts. But after agreeing to take part she never saw the professo
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Rose - Interview 17
>>
It is important for staff not to try to influence you. If you say yes just because you like the researcher it could cause problems.
Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Rose - Interview 17
>>
Rose volunteered to ‘give something back’. She knew both treatments were tried and tested, and was happy to be in the control group. But she would hav
Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
Tom was invited to join a non-randomised Phase 2 trial of chemotherapy for inoperable lung cancer. He knew it might not help him, but might help other
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
Joining a trial when you have a serious illness is very different to ‘healthy volunteer’ trials. People need more information and education about tria
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
It was a relief when the trial ended and he no longer had to cope with side effects and lots of blood tests, but he also felt quite worried and unsure
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
Elizabeth declined to take part in a trial in early stage ovarian cancer. She felt she did not need extra treatment and was worried about side effects
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
It was reassuring to discover she could ask to come back for further ovarian cancer screening after the trial ended.
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
Joanna found the internal scans quite uncomfortable, and the way she was called back for further tests made her anxious. But she didn’t feel the resea
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
If someone had mentioned the trial earlier on it would have been less of a shock when she was feeling so vulnerable. The idea needs to be introduced s
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
Rosamund got a letter about the ovarian screening trial. She wanted more information and asked to see the whole trial protocol. She was annoyed they o
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
Joanna describes the ovarian cancer screening trial, comparing no screening, a blood test and a vaginal ultrasound scan.
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
The questions in the ovarian screening questionnaire didn’t seem to be about things women themselves would think important. Input from consumers would
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
Rosamund would not have agreed to take part in a study which did not use randomisation to make the groups comparable – it is the only way to get a rel
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
He can see that often a placebo might be safer than the trial drug. But in his case, he feels the evidence is already so strong he would not be happy
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
The tablets Julian takes are very large and patients find them hard to take, but this is something that can’t be changed half-way through a trial.
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
>>
Clinical Trials
>>
Organising trials
>>
Sir Iain Chalmers - Interview 30
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Iain explains why he thinks randomised trials are the only ethical way to make progress when we don’t know which treatment is best, for example in pro
Iain is a keen advocate for well-designed randomised controlled trials to test treatments.
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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He has sometimes picked up mistakes in the letters sent to his GP from the trial. This is a good reason for patients to see copies of the letters.
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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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
>>
Cancer - Non-randomised studies
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Julian - Interview 33
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Julian describes the high quality of care and monitoring in his Phase 1 trial.
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
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Julian - Interview 33
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Julian joined a Phase 1 prostate cancer trial hoping it would benefit him, but also to help find out if the drug is safe for others. Phase 2 trials of
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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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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Organising trials
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Sir Iain Chalmers - Interview 30
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Iain explains the worry that screening tests may raise anxiety, especially if it is unclear what to do once a problem is found, as in prostate cancer
Iain is a keen advocate for well-designed randomised controlled trials to test treatments.
Medical research
>>
Clinical Trials
>>
Organising trials
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Sir Iain Chalmers - Interview 30
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Treatment for prostate cancer can have unpleasant side effects. Because the best way of treating it is uncertain, a trial comparing different treatmen
Iain is a keen advocate for well-designed randomised controlled trials to test treatments.
Medical research
>>
Clinical Trials
>>
Trials involving surgery
>>
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
>>
Clinical Trials
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Not taking part in a trial
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Charles - Interview 29
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Charles volunteered for two trials on prostate cancer screening and a new treatment for erectile dysfunction. He mainly hoped it would benefit him, an
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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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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Charles - Interview 29
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Charles volunteered for a trial involving prostate cancer testing. He was pleased to discover he was at low risk, as he thinks there is a family histo
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
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Testing treatments that target people with cancer who have the BRCA genetic mutation may be of direct benefit to his daughters. Julian wants to help t
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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Tony - Interview 36
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Tony says medical advances cannot be made unless people volunteer. He has benefited from drugs trialled by others in the past, and if he can do the sa
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
>>
Organising trials
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Sir Iain Chalmers - Interview 30
>>
Iain explains the worry that screening tests may raise anxiety, especially if it is unclear what to do once a problem is found, as in prostate cancer
Iain is a keen advocate for well-designed randomised controlled trials to test treatments.
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