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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
Topic
Medical research
>>
Clinical Trials
>>
Attitudes to taking part in another trial
>>
Attitudes to taking part in another trial
Attitudes to taking part in another trial
Medical research
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Clinical Trials
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Being asked about taking part in a trial
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Being asked about taking part in a trial
Being asked about taking part in a trial
Medical research
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Clinical Trials
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Information and questions
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Information and questions
Information and questions
Medical research
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Clinical Trials
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Difficulties finding a trial to join
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Difficulties finding a trial to join
Difficulties finding a trial to join
Clip
Medical research
>>
Clinical Trials
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Screening, prevention other medical interventions
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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
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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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It was hard being asked about a trial when she was feeling shocked and worried. But she understands that timing is important when treatment decisions
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
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Jenny - Interview 40
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Jenny was pleased to be invited by her GP to take part in a trial of different treatments for very heavy periods.
Jenny is in a trial of different ways of treating heavy periods at her GP surgery. The trial compares standard treatment with a new kind of coil or intrauterine device which releases a hormone in the womb.
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 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
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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
>>
Clinical Trials
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Screening, prevention other medical interventions
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Sue - Interview 01
>>
Sue was asked about the trial when the midwife could not hear her baby’s heart and she came for an emergency scan. But she did not feel too stressed o
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
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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
>>
Not taking part in a trial
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Hazel - Interview 05
>>
The trial was explained clearly but Hazel felt in limbo when she was sent away to think about it. She just wanted someone to tell her what treatment t
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
>>
Clinical Trials
>>
Trials involving surgery
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Merilyn - Interview 41
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Merilyn gets on really well with the research nurse and feels comfortable talking to her. That helped when she had to decide quickly whether to take p
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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Screening, prevention other medical interventions
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Amanda - Interview 22
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Even as a doctor who likes to have lots of information, sometimes when she is severely ill she just wants to trust someone to make a decision for her.
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
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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
>>
Not taking part in a trial
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Elizabeth - Interview 27
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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
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Clinical Trials
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Organising trials
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Lester - Interview 06
>>
In the trial Lester chaired it was hard to approach patients with CJD (Creutzfeldt-Jakob Disease) in the short time between diagnosis and death.
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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Marie - Interview 25
>>
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
>>
Not taking part in a trial
>>
Gill - Interview 10
>>
Researchers need to think carefully about how they recruit patients, and consult at an early stage with staff who will be talking to people about the
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 - Non-randomised studies
>>
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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Not taking part in a trial
>>
Hazel - Interview 05
>>
Giving informed consent when she knew nothing about clinical trials, the condition itself, or the treatment options was ‘a pretty tall order’.
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
>>
Not taking part in a trial
>>
Polly - Interview 09
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Judith - Interview 24
>>
At first she didn’t know what questions to ask and sat there ‘like a nodding dog’. Now she feels more confident to ask questions about the aims of the
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
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Clinical Trials
>>
Cancer - Non-randomised studies
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Pam - Interview 21
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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
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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 and her husband hoped a trial of grass pollen immunotherapy would improve their hay fever, and also help others in future. Free medication was an
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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David - Interview 34
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David joined a trial of treatments for asthma because he wanted to learn more about the condition, as well as to help medical research. The expenses p
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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David - Interview 34
>>
David joined a trial of treatments for asthma because he wanted to learn more about the condition, as well as to help medical research. The expenses p
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
>>
Long term conditions
>>
Danny - Interview 26
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Danny’s husband learnt he had diabetes when he was being monitored during a previous trial. They both volunteered for another trial because it helps t
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
>>
Clinical Trials
>>
Trials involving surgery
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Alex - Interview 45
>>
Alex wonders if he got faster access to diagnostic tests because he’d agreed to be in the trial, but he thinks the quality of care overall was no diff
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
>>
Mental health trials
>>
Fenella - Interview 20
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Looking back, Fenella feels one benefit of being in the trial was having access to staff who were expert and motivated to find the very best treatment
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
>>
Cancer drugs and radiotherapy - randomised trials
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Wendy - Interview 02
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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
>>
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
>>
Caroline - Interview 08
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As someone who has worked in healthcare, Caroline took part as a favour to the staff, because she knows how hard it can be to recruit volunteers for r
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
>>
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
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Clinical Trials
>>
Not taking part in a trial
>>
Marie - Interview 25
>>
It’s vital to understand all the trial information, but that’s difficult for ordinary people. Marie advises people to go through it with someone, pref
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Lesley - Interview 44
>>
She felt this was a decision she had to make for herself. The research assistant accepted her decision and did not try to change her mind.
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
>>
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
>>
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
>>
Long term conditions
>>
Sarah - Interview 38
>>
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
>>
Clinical Trials
>>
Long term conditions
>>
Sarah - Interview 38
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Celia - Interview 12
>>
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
>>
Clinical Trials
>>
Long term conditions
>>
Sarah - Interview 38
>>
Sarah wouldn’t take part in another trial involving anything invasive. She started a trial of lipids medication, but was disappointed to learn she was
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Sabiha - Interview 19
>>
As a diabetic, she knew she was at risk from high cholesterol. She was glad to learn her cholesterol levels were too low to join the trial, but disapp
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Charles - Interview 29
>>
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
>>
Not taking part in a trial
>>
Charles - Interview 29
>>
He volunteered for another trial, testing a nasal inhaler for erectile dysfunction. He checked at the first appointment that he was in the eligible ag
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
>>
Not taking part in a trial
>>
Charles - Interview 29
>>
After a lengthy second appointment, an administrator spotted that he had just turned 66, so he was told he was ineligible. He felt it was badly handle
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
>>
Mental health trials
>>
Anton - Interview 28
>>
Anton does not take no for an answer and will go to great lengths to persuade staff to include him in a trial, even if he does not meet the eligibilit
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
>>
Clinical Trials
>>
Long term conditions
>>
Danny - Interview 26
>>
When it was discovered her summer holiday clashed with the next trial appointment, Danny was told she might be excluded. The word ‘excluded’ made her
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Judith - Interview 24
>>
Judith was asked about a trial of a new fibre-optic camera to be used by the anaesthetist during surgery to give a better view of her larynx.
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
>>
Screening, prevention other medical interventions
>>
Sabiha - Interview 19
>>
Sabiha thinks long information leaflets can be off-putting. It would be good for people to have a summary of key points.
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
She felt some possible disadvantages of taking part were missing from the information leaflet. She thinks it’s unlikely greater honesty would have put
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 drugs and radiotherapy - randomised trials
>>
Rose - Interview 17
>>
Jargon and abbreviations are hard to understand. Face-to-face discussion could help people who don’t like reading, especially at a time when you’re fe
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
>>
Long term conditions
>>
Elvan - Interview 15
>>
Elvan feels you need to trust your doctors as the experts. It didn’t matter to him which group he was in.
Elvan took part in a trial of medication for hypertension. His blood pressure did not improve much, but he felt well cared for and is glad to have taken part. He has since joined another trial in the same unit.
Medical research
>>
Clinical Trials
>>
Long term conditions
>>
Sergio - Interview 37
>>
Sergio has always supported the idea of medical research, so when he was first diagnosed with diabetes, he asked his GP if there was any research he c
Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.
Medical research
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Sabiha - Interview 19
>>
Feedback of results shows respect for people’s contribution. If they don’t feel involved they may be less likely to volunteer again in future.
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Hazel - Interview 05
>>
Hazel would probably take part in a trial another time, but you can never be sure until you have a real decision to make. It would depend on the trial
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Gill - Interview 10
>>
Gill would want to know a lot about the interventions being tested. She’d take part if there was genuine uncertainty about which treatment was best an
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 - 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 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 - 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
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
Joanna suggests getting opinions from other people before consenting to a trial, and considering its wider value and importance. Most trials won’t bri
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
>>
Gill - Interview 10
>>
Gill thinks people should not go into a trial expecting it will solve their immediate problems. Trials are about the future, and the bigger picture.
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
>>
Screening, prevention other medical interventions
>>
Leslie - Interview 43
>>
He felt the patient information leaflet did not say enough about possible side effects from the drug.
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Leslie - Interview 43
>>
Leslie advises volunteers to check why the research is being done and what has already been found out about the treatment, especially possible side ef
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
>>
Clinical Trials
>>
Trials involving surgery
>>
Alex - Interview 45
>>
Having a DVD as well as written information was really helpful. Alex did not feel much need to discuss it with anyone else before giving consent.
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
>>
Clinical Trials
>>
Not taking part in a trial
>>
Polly - Interview 09
>>
Polly advises people to ask a lot of questions and get a second opinion if possible.
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 - Non-randomised studies
>>
Julian - Interview 33
>>
It’s very hard for doctors to judge the right level of information to give each person, and for patients to stop them if they don’t understand somethi
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
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
Rosamund does not think people should be paid to be in trials, but staff need to recognise that people work and can’t always take time off easily.
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
>>
Long term conditions
>>
Angela - Interview 23
>>
Angela does not like the idea of paying people to take part. People need to volunteer if medicine is to make progress – but it was easier for her as s
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Sabiha - Interview 19
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Appointments at evenings and weekends would make it easier for people. A token payment for their time might also help, and would not put pressure on p
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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Mental health trials
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Anton - Interview 28
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A small payment doesn’t worry him, but if you pay too much it may attract the wrong people. When it’s a commercial company running a trial he expects
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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Long term conditions
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David - Interview 34
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David advises people to think carefully about taking part in trials only for money. It’s different when it’s a new treatment for a condition you have.
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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Phil - Interview 11
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Phil was happy with his first experience of a trial, and has recently volunteered for a similar trial. He values the expert supervision.
Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.
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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She might be interested in taking part another time, but she has become a bit cynical about trials. She’d want to ask a lot of questions, and make up
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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Caroline - Interview 08
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Caroline might take part another time, but not in the case of serious illness. She advises others to think carefully before saying yes, ask questions,
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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Caroline - Interview 08
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After the birth, Caroline took part in an audit of the information she’d been given. She was made to feel she’d failed a test. It raised wider questio
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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Rosamund - Interview 18
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Involving people in research can seem tokenistic, but it’s still useful to have comments on leaflets and questionnaires to make them more understandab
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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Organising trials
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Lester - Interview 06
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It comes down to whether you can trust your doctor if they tell you they do not know which treatment is best. Knowing that a trial has ethics approval
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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Long term conditions
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Harry - Interview 07
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Harry got a letter from the trial clinic saying his name had been put forward by his doctor. It seemed like a good opportunity to have some health che
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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