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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
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
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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
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Clinical Trials
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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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Trials involving surgery
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Merilyn - Interview 41
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Merilyn was quite pleased when she found out which type of by-pass surgery she had been allocated to, but she didn’t really mind either way.
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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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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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
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Wendy - Interview 02
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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
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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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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
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Clinical Trials
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Trials involving surgery
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Merilyn - Interview 41
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Merilyn 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
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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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
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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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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
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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
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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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Not taking part in a trial
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Gill - Interview 10
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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
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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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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
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Not taking part in a trial
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Polly - Interview 09
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When people are sick they may not want choice. They may want their doctor to be honest about uncertainties, but also to advise them what’s best.
Polly was invited to be in a trial comparing tamoxifen against a placebo for breast cancer in the 1990s. She decided not to take part, because she felt there was already good evidence to support the use of tamoxifen.
Medical research
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Judith - Interview 24
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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
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Screening, prevention other medical interventions
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Joanna - Interview 04
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She knows some people who are not interested in trials. She thinks it depends whether the hospital you go to has an active research culture or not.
Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.
Medical research
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Clinical Trials
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Cancer - Non-randomised studies
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Julian - Interview 33
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Julian asked to be referred to a specialist hospital to take part in a Phase 1 trial. His consultant was a bit worried about the risks, but they discu
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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Amanda - Interview 22
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Amanda wanted to run a trial on herself to see if a change of drug made any real difference to her arthritis, but was held up by the ethics approval p
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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Not taking part in a trial
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Marie - Interview 25
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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
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Clinical Trials
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Organising trials
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Lester - Interview 06
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When his son was dying, Lester wouldn’t have wanted anything to be intrusive. He knows trials are essential, but at the time it was about helping his
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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Organising trials
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Lester - Interview 06
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Even with experience of helping run a trial, he is unsure if he would volunteer if he was terminally ill. Maybe people should carry something like a d
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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Elizabeth - Interview 27
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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
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Clinical Trials
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Screening, prevention other medical interventions
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Sabiha - Interview 19
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It never occurred to her to drop out of the breast screening trial. She likes to see things through and wouldn’t want to do anything to damage the tri
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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Long term conditions
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Kate - Interview 13
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Kate advises people to think carefully about the commitment involved before they agree. If you are going to pull out, do it as early as possible for t
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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Angela - Interview 23
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Angela had some distressing side effects. She told staff but kept going because she had made a commitment and wanted to honour it. She knew it was onl
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
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Wendy - Interview 02
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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
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Clinical Trials
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Long term conditions
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Harry - Interview 07
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After the dose of the drug was increased, Harry had bad side effects. He almost gave up, but the senior clinician explained what had happened and enco
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.
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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After he’d started the trial, there were scare stories about the type of treatment being tested. He felt it was too late to stop, but might have thoug
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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Danny - Interview 26
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Danny stopped taking the trial tablets when she developed side effects, as she thought might happen. She felt staff reacted as if ‘I was no good to th
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
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Clinical Trials
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Long term conditions
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Kate - Interview 13
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Occasionally Kate and her husband found keeping appointments ‘a bit of a chore’, especially when he realised he must be in the placebo group, but they
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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Sarah - Interview 38
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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
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Clinical Trials
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Long term conditions
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Sarah - Interview 38
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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
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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 surprised to find she was eligible for a diabetes prevention trial. She withdrew because she was annoyed that staff told her GP she was at
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
>>
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
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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
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Clinical Trials
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Trials involving surgery
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Alex - Interview 45
>>
He doesn’t remember being told if he would receive the results. He asked to see a copy, but not everyone would want to.
Alex fractured his heel in 2007. He agreed to take part in a trial comparing surgery with letting the bones heal naturally. He was randomised to the group having surgery, and his heel is slowly recovering.
Medical research
>>
Clinical Trials
>>
Trials involving surgery
>>
Merilyn - Interview 41
>>
Merilyn would like to know how the trial is going, but she hasn’t asked. She doesn’t think she was promised a copy of the final results.
Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.
Medical research
>>
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
>>
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
>>
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 - Non-randomised studies
>>
Anthea - Interview 39
>>
Anthea knew she could withdraw if she had bad side effects, but in fact they were generally mild. Only once at the beginning she had to stop for a wee
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
>>
Mental health trials
>>
Fenella - Interview 20
>>
Every trial has some risk, but medical research is carefully regulated to protect patient safety, and not all trials are about drugs.
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
>>
Clinical Trials
>>
Long term conditions
>>
Kate - Interview 13
>>
There was a small risk from the injections of anaphylactic shock, but there were safety precautions in place. They kept a diary to report other reacti
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Joanna - Interview 04
>>
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
>>
Clinical Trials
>>
Long term conditions
>>
Harry - Interview 07
>>
Trials are designed to find out things that don’t work. Doctors are there to help, and if you have any problems you should tell them straight away and
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.
Medical research
>>
Clinical Trials
>>
Not taking part in a trial
>>
Marie - Interview 25
>>
Marie’s GP spent time discussing her concerns about the trial and her consultant contacted the trial on her behalf to say she was not happy to take pa
Marie was diagnosed with chronic lymphocytic leukaemia in 1992. She was recently invited to take part in a clinical trial of a new monoclonal antibody. At first she thought she would take part but after reading all the details decided against it.
Medical research
>>
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
>>
Not taking part in a trial
>>
Marie - Interview 25
>>
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
>>
Clinical Trials
>>
Long term conditions
>>
Kate - Interview 13
>>
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Amanda - Interview 22
>>
In a randomised trial we do not know which treatment is best, so we don’t know if it’s better to be in one group or another. Randomisation is the best
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
>>
Not taking part in a trial
>>
Hazel - Interview 05
>>
Hazel feels passionately that the public needs better information about trials. The need to compare things to decide which is best is something people
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
>>
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
>>
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
>>
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
>>
Long term conditions
>>
Kate - Interview 13
>>
Kate’s husband was annoyed when he guessed he was in the placebo group. He continued for the sake of the study, but it was a relief when it ended. He
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
>>
Clinical Trials
>>
Long term conditions
>>
Sergio - Interview 37
>>
Sergio was told at the end of the trial he had been taking the active drug, but his diabetes symptoms had not changed. He always understood the trial
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
>>
Mental health trials
>>
Fenella - Interview 20
>>
Fenella explains the trial treatment for borderline personality disorder and why questionnaires were important to check the effect on her mental state
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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Cancer drugs and radiotherapy - randomised trials
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Celia - Interview 12
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Her GP asked her permission to send monitoring information about her to the trial staff. She has no more direct contact with the trial, but hopes she’
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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Long term conditions
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Angela - Interview 23
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Angela would take part in a trial another time, including a placebo-controlled trial, because she feels it’s important for medical science.
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
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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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Organising trials
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Lester - Interview 06
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Lester advises people to get lots of information. Now he knows more about trials he’d be more likely to take part if his doctor offered one, especiall
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
>>
Cancer drugs and radiotherapy - randomised trials
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Rose - Interview 17
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Rose would not want to test very experimental treatments, unless she was terminally ill. Then she might do it to benefit future generations, such as h
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
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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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Cancer - Non-randomised studies
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Tom - Interview 14
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When someone is seriously ill it’s not the best time to explain clinical trials. We need more general awareness, to challenge the idea that research i
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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Cancer drugs and radiotherapy - randomised trials
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Celia - Interview 12
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Celia’s message to others asked to take part in a trial is to look at it seriously and see if you are able to help.
Celia took part in a randomised controlled trial comparing different periods of radiotherapy for lymphoma. She was would have preferred the shorter course; she was allocated to the longer course but took part anyway.
Medical research
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Clinical Trials
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Trials involving surgery
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Merilyn - Interview 41
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Being in a trial is a personal decision, but Merilyn encourages people to consider it. Medicine can only make progress if people volunteer.
Merilyn took part in a randomised trial of different procedures for carrying out a heart bypass operation. She was in the group which had the new procedure.
Medical research
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Clinical Trials
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Cancer - Non-randomised studies
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Julian - Interview 33
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It’s difficult to advise others, but Julian recommends taking part in a trial, both because it helps others and because you get close monitoring and a
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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Long term conditions
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Phil - Interview 11
>>
Phil encourages others to think about taking part in a trial unless they have real fears. You’ll be safe and well looked after, and can always pull ou
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Jayne - Interview 03
>>
Unless you have strong feelings about which trial group you would want to be in, Jayne advises people to take part. She is confident in the system of
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
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Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
Anthea suggests that if people have real doubts or worries, they should not agree to take part.
Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.
Medical research
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
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Wendy advises people to get plenty of information and think through the implication for their family before consenting to a trial. You have to make a
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
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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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Think carefully before taking part in a trial, and try not to be too influenced by family. They want the best for you, but they don’t know what you re
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
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Professionals need to be very honest with patients, and be sure they really feel the trial is ethical before asking people to take part.
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
>>
Cancer drugs and radiotherapy - randomised trials
>>
Celia - Interview 12
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Celia felt well-informed herself, but as a lay representative she knows people often find trial information too complicated.
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
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Pam asks doctors to understand how difficult it is to take in all the information, to be patient when people ask questions, and to spell out all the a
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
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
Elizabeth asks clinicians to treat each person as an individual, respect their choices and give them time to think.
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
>>
Organising trials
>>
Lester - Interview 06
>>
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
>>
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
>>
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 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
>>
Rose - Interview 17
>>
Patients may look calm and unemotional on the surface, but they may not be feeling that way underneath.
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.
Topic
Medical research
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Clinical Trials
>>
Reasons for wanting to take part – personal benefit
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Reasons for wanting to take part – personal benefit
Reasons for wanting to take part – personal benefit
Medical research
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Clinical Trials
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Reasons for wanting to take part – helping medical science
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Reasons for wanting to take part – helping medical science
Reasons for wanting to take part – helping medical science and other people
Medical research
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Clinical Trials
>>
Deciding not to take part
>>
Deciding not to take part
Deciding not to take part
Medical research
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Clinical Trials
>>
Thinking about withdrawing from a trial
>>
Thinking about withdrawing from a trial
Thinking about withdrawing from a trial
Medical research
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Clinical Trials
>>
Feedback of trial results
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Feedback of trial results
Feedback of trial results
Medical research
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Clinical Trials
>>
Attitudes to taking part in another trial
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Attitudes to taking part in another trial
Attitudes to taking part in another trial
Medical research
>>
Clinical Trials
>>
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
>>
Information and questions
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Information and questions
Information and questions
Medical research
>>
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
Medical research
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Clinical Trials
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Feelings about being in a placebo-controlled trial
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Feelings about being in a placebo-controlled trial
Feelings about being in a placebo-controlled trial
Medical research
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Clinical Trials
>>
Non-randomised trial designs and other studies
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Non-randomised trial designs and other studies
Non-randomised trial designs and other studies
Medical research
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Clinical Trials
>>
Side effects and queries
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Side effects and queries
Side effects and queries
Medical research
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Clinical Trials
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Public awareness and involvement
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Public awareness and involvement
Public awareness and involvement
Medical research
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Clinical Trials
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Messages to other people
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Messages to other people
Messages to other people
Medical research
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Clinical Trials
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Messages to professionals
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Messages to professionals
Messages to professionals
Medical research
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Clinical Trials
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Messages to professionals
>>
Messages to professionals
Messages to professionals
Medical research
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Clinical Trials
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Messages to other people
>>
Messages to other people
Messages to other people
Medical research
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Clinical Trials
>>
Public awareness and involvement
>>
Public awareness and involvement
Public awareness and involvement
Medical research
>>
Clinical Trials
>>
Side effects and queries
>>
Side effects and queries
Side effects and queries
Medical research
>>
Clinical Trials
>>
Non-randomised trial designs and other studies
>>
Non-randomised trial designs and other studies
Non-randomised trial designs and other studies
Medical research
>>
Clinical Trials
>>
Feelings about being in a placebo-controlled trial
>>
Feelings about being in a placebo-controlled trial
Feelings about being in a placebo-controlled trial
Medical research
>>
Clinical Trials
>>
Information and questions
>>
Information and questions
Information and questions
Medical research
>>
Clinical Trials
>>
Being asked about taking part in a trial
>>
Being asked about taking part in a trial
Being asked about taking part in a trial
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
>>
Clinical Trials
>>
Feedback of trial results
>>
Feedback of trial results
Feedback of trial results
Medical research
>>
Clinical Trials
>>
Thinking about withdrawing from a trial
>>
Thinking about withdrawing from a trial
Thinking about withdrawing from a trial
Medical research
>>
Clinical Trials
>>
Deciding not to take part
>>
Deciding not to take part
Deciding not to take part
Medical research
>>
Clinical Trials
>>
Reasons for wanting to take part – helping medical science
>>
Reasons for wanting to take part – helping medical science
Reasons for wanting to take part – helping medical science and other people
Medical research
>>
Clinical Trials
>>
Reasons for wanting to take part – personal benefit
>>
Reasons for wanting to take part – personal benefit
Reasons for wanting to take part – personal benefit
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