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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
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Clinical Trials
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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
>>
Clinical Trials
>>
Communication between different health professionals
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Communication between different health professionals
Communication between different health professionals
Medical research
>>
Clinical Trials
>>
What are clinical trials and why do we need them?
>>
What are clinical trials and why do we need them?
What are clinical trials and why do we need them?
Medical research
>>
Clinical Trials
>>
Side effects and queries
>>
Side effects and queries
Side effects and queries
Medical research
>>
Clinical Trials
>>
Side effects and queries
>>
Side effects and queries
Side effects and queries
Clip
Medical research
>>
Clinical Trials
>>
Long term conditions
>>
Phil - Interview 11
>>
Phil explains what the blood pressure trial was comparing and how people were allocated at random to different groups. He felt safe because he knew th
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
>>
Trials involving surgery
>>
Merilyn - Interview 41
>>
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
>>
Clinical Trials
>>
Organising trials
>>
Sir Iain Chalmers - Interview 30
>>
Iain explains the worry that screening tests may raise anxiety, especially if it is unclear what to do once a problem is found, as in prostate cancer
Iain is a keen advocate for well-designed randomised controlled trials to test treatments.
Medical research
>>
Clinical Trials
>>
Organising trials
>>
Sir Iain Chalmers - Interview 30
>>
Treatment for prostate cancer can have unpleasant side effects. Because the best way of treating it is uncertain, a trial comparing different treatmen
Iain is a keen advocate for well-designed randomised controlled trials to test treatments.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
He knew he could stop if the side effects became too bad. He felt the staff explained it well, but not everyone wants as much information as he did.
Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
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
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Amanda - Interview 22
>>
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
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Pam has breast cancer which spread to her bones and liver. Taking a trial drug seemed‘a lifeline’ she could not refuse, despite serious side effects.
Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)
Medical research
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
She thought being in the trial would mean she would be really well looked after by experts. But after agreeing to take part she never saw the professo
Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
Testing treatments that target people with cancer who have the BRCA genetic mutation may be of direct benefit to his daughters. Julian wants to help t
Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.
Medical research
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Tony - Interview 36
>>
Tony says medical advances cannot be made unless people volunteer. He has benefited from drugs trialled by others in the past, and if he can do the sa
Tony took part in a double-blind, placebo-controlled trial of Viagra (sildenafil) for erectile dysfunction following a prostate operation. He was in the placebo arm but was given Viagra after the trial ended. (Husband of Pam, Interview 21).
Medical research
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Rose - Interview 17
>>
Rose volunteered to ‘give something back’. She knew both treatments were tried and tested, and was happy to be in the control group. But she would hav
Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.
Medical research
>>
Clinical Trials
>>
Screening, prevention other medical interventions
>>
Rosamund - Interview 18
>>
Rosamund supports medical research, but it depends how invasive the different interventions are. She felt having ovarian screening could be uncomforta
Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.
Medical research
>>
Clinical Trials
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
When she told the consultant her decision, he seemed angry, which made her feel vulnerable and upset. She worried that if she had dropped out after ra
Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.
Medical research
>>
Clinical Trials
>>
Organising trials
>>
Lester - Interview 06
>>
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
>>
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
>>
Angela - Interview 23
>>
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
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
It was always made clear she could withdraw at any time. She thought about it because of the side effects, but felt it would have been a waste of time
Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.
Medical research
>>
Clinical Trials
>>
Long term conditions
>>
Harry - Interview 07
>>
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
>>
Clinical Trials
>>
Long term conditions
>>
David - Interview 34
>>
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
>>
Clinical Trials
>>
Long term conditions
>>
Danny - Interview 26
>>
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
>>
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
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
Julian joined a Phase 1 prostate cancer trial hoping it would benefit him, but also to help find out if the drug is safe for others. Phase 2 trials of
Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
The doctors explained very honestly their uncertainty about the treatment and the risks. Careful monitoring is important.
Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Julian - Interview 33
>>
Julian describes the high quality of care and monitoring in his Phase 1 trial.
Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Pam could only get lapatinib through an open-label expanded access study. She’d have joined a randomised trial if necessary, but feels NICE should app
Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)
Medical research
>>
Clinical Trials
>>
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
>>
Trials involving surgery
>>
Merilyn - Interview 41
>>
Since the bypass surgery she has had pain for several years. She wonders whether it was because of the new way the operation was done as part of the t
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
>>
Trials involving surgery
>>
Merilyn - Interview 41
>>
She has found it hard to deal with how the scar looks. She’d have liked to talk to other women patients about how they felt. The hospital could not of
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 drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
It might have been useful for her GP and the Macmillan nurses to know more about possible side effects, but trial staff told her to come back to them
Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.
Medical research
>>
Clinical Trials
>>
Not taking part in a trial
>>
Marie - Interview 25
>>
The information leaflet was complicated and reading it made Marie angry. She was worried about side effects, the fact that the drug might be withdrawn
Marie was diagnosed with chronic lymphocytic leukaemia in 1992. She was recently invited to take part in a clinical trial of a new monoclonal antibody. At first she thought she would take part but after reading all the details decided against it.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
Anthea completed a 12-month trial of interferon. When the melanoma returned, she joined a trial of Taxol (paclitaxel), but was advised to stop early b
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
>>
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
>>
Long term conditions
>>
Sarah - Interview 38
>>
Doing your best to help others is important – if being in a trial also helps you as an individual, so much the better.
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
>>
Not taking part in a trial
>>
Elizabeth - Interview 27
>>
It is important that trial results are explained to participants, whether they are positive or negative. People will find out one way or another, and
Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.
Medical research
>>
Clinical Trials
>>
Cancer 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
>>
Elizabeth - Interview 27
>>
It’s important to tell people about trials, but she wonders if clinicians always appreciate the commitment they’re asking people to make, the side eff
Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.
Medical research
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Wendy - Interview 02
>>
She was told she wouldn’t be paid, but any drugs she needed to manage side effects would be provided. However, she ended up having to pay for some dru
Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.
Medical research
>>
Clinical Trials
>>
Cancer drugs and radiotherapy - randomised trials
>>
Rose - Interview 17
>>
Rose wonders if she saw a doctor less often because she was in a trial. The nurse dealt with side effects. She felt some people assumed she didn’t nee
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
>>
Danny - Interview 26
>>
Danny noticed there seemed to be a pattern that the side effect of coughing happened when she hadn’t eaten for a while. The researcher wasn’t interest
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 - Non-randomised studies
>>
Pam - Interview 21
>>
Pam was told grapefruit, evening primrose oil and antibiotics can interact with the trial drug (lapatinib). She had bad side effects when she took an
Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)
Medical research
>>
Clinical Trials
>>
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
>>
Organising trials
>>
Lester - Interview 06
>>
Drug companies will of course research products in order to make money, but the UK has a good system of regulation. Lester is more worried about wheth
Lester’s son Ellis died in 2001 of variant CJD. Lester later became involved as a lay chair of a trial looking at the effectiveness of a drug called quinacrine for people with variant CJD.
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Pam - Interview 21
>>
Pam would like to see more research into the needs and experiences of family carers. Her husband has had to take on a lot while she has been coping wi
Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)
Medical research
>>
Clinical Trials
>>
Cancer - Non-randomised studies
>>
Anthea - Interview 39
>>
Anthea describes what a Phase 1 trial is. No-one knows what the side effects will be and whether it will work, but she is very closely monitored.
Anthea was diagnosed with malignant melanoma in 2000. She has been in a randomised trial of treatment with interferon and is now in a phase 1 trial of a combination of drugs which attack the DNA of cancer cells.
Medical research
>>
Clinical Trials
>>
Cancer - 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
>>
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
>>
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
>>
Screening, prevention other medical interventions
>>
Leslie - Interview 43
>>
Leslie was taken off the trial by hospital staff when he became so ill he was rushed into hospital by ambulance.
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 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
>>
Screening, prevention other medical interventions
>>
Leslie - Interview 43
>>
During the trial, Leslie became more and more ill, but the trial staff didn’t seem to connect his symptoms with an effect of the trial drug estimated
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
>>
Cancer - Non-randomised studies
>>
Tom - Interview 14
>>
Joining a trial when you have a serious illness is very different to ‘healthy volunteer’ trials. People need more information and education about tria
Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.
Medical research
>>
Clinical Trials
>>
Long term conditions
>>
Harry - Interview 07
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Harry had two unexpected drug interactions when he started taking other drugs alongside the trial drugs. He doesn’t remember anything about it in the
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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Screening, prevention other medical interventions
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Joanna - Interview 04
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Joanna found the internal scans quite uncomfortable, and the way she was called back for further tests made her anxious. But she didn’t feel the resea
Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.
Medical research
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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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The extra side effects meant she had to give up work and lost money as a result. There was a lot of disruption to family life, but they found a new ro
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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Screening, prevention other medical interventions
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Sabiha - Interview 19
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Sabiha would have used her own annual leave to cover time off work for trial appointments.
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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Screening, prevention other medical interventions
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Rosamund - Interview 18
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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
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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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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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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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Trials involving surgery
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Merilyn - Interview 41
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Follow-up after the trial doesn’t include questions about the surgical scar and post-operative pain, or about wider lifestyle issues, which Merilyn fi
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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Tom - Interview 14
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It was a relief when the trial ended and he no longer had to cope with side effects and lots of blood tests, but he also felt quite worried and unsure
Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.
Medical research
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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
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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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Long term conditions
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Angela - Interview 23
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Angela thinks it’s a pity much publicity about trials has been negative and all about side effects. People need to come forward with positive stories.
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 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
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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 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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Elizabeth - Interview 27
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Elizabeth declined to take part in a trial in early stage ovarian cancer. She felt she did not need extra treatment and was worried about side effects
Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.
Medical research
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Clinical Trials
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Cancer drugs and radiotherapy - randomised trials
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Jayne - Interview 03
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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
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Clinical Trials
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Long term conditions
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Sergio - Interview 37
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Sergio was not worried about whether he got the placebo or the active drug. Since the case at Northwick Park, he has been more wary of the possible ri
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
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Clinical Trials
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Cancer - Non-randomised studies
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Julian - Interview 33
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He can see that often a placebo might be safer than the trial drug. But in his case, he feels the evidence is already so strong he would not be happy
Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.
Medical research
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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 was relieved when the trial finished and she did not have to make the daily journey. She has no regrets, though she still worries that the extra
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.
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