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• 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 >> Public awareness and involvement >> Public awareness and involvement

Public awareness and involvement

• Clip
• 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 >> Organising trials >> Sir Richard Doll - Interview 31 >> Sir Richard Doll, a pioneer of clinical trials, explains an early attempt to run a randomised trial with wounded soldiers during WWII, and the lack of

Sir Richard Doll was one of the doctors who first demonstrated the link between lung cancer and smoking. He was Warden of Green College, Oxford. He was interviewed shortly before his death, in 2005.

• Medical research >> Clinical Trials >> Not taking part in a trial >> Hazel - Interview 05 >> It is vital that trials are well designed and build on existing knowledge, and that they focus on things which really matter to patients.

Hazel learnt she had breast cancer (DCIS) after screening in 1991. After surgery she was asked to be in a trial comparing no further treatment with radiotherapy, tamoxifen, or radiotherapy and tamoxifen combined. She declined to take part. (You can see Hazel talking more about her experiences on the Healthtalkonline site on Breast cancer screening, Interview 17 & DCIS, Interview 26).

• Medical research >> Clinical Trials >> Organising trials >> Sir Richard Doll - Interview 31 >> Sir Richard Doll explains why it can be useful for trials to compare several things at once and why it is important to have enough participants to get

Sir Richard Doll was one of the doctors who first demonstrated the link between lung cancer and smoking. He was Warden of Green College, Oxford. He was interviewed shortly before his death, in 2005.

• 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 >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> Amanda has worked on reviews of evidence about medical treatments, and is still shocked sometimes to find out how little evidence we have for some thi

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 >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna thought the questionnaire about feelings was badly designed. She tried to point out that her feelings were related to her husband’s illness, no

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

• Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Judith - Interview 24 >> 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 >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> Amanda worries that commercial trials may suppress ‘negative’ findings. Good research is not cheap, and she feels it should be nationally funded, with

Amanda has taken part in a trial of pro-biotic yoghurt for irritable bowel syndrome, and withdrew from a trial about early interventions to prevent diabetes. She is setting up a website for the public to design their own trials.

• Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> Lester describes the process of designing and approving a trial, from steering group and systematic review to 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 >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> Caroline felt the researchers were only interested in certain questions which weren’t really about her experience. The questionnaire was long and repe

Caroline’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Amanda - Interview 22 >> Amanda was a member of a research ethics committee and was surprised it was not seen as not part of their role to insist on full publication as a cond

Amanda has taken part in a trial of pro-biotic yoghurt for irritable bowel syndrome, and withdrew from a trial about early interventions to prevent diabetes. She is setting up a website for the public to design their own trials.

• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> The questions in the ovarian screening questionnaire didn’t seem to be about things women themselves would think important. Input from consumers would

Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.

• Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> Lay people can help make trial information leaflets more responsive to patients. There are differences in power and information between doctors and pa

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 >> Trials involving surgery >> Merilyn - Interview 41 >> 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 >> 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 >> Cancer - Non-randomised studies >> Julian - Interview 33 >> The tablets Julian takes are very large and patients find them hard to take, but this is something that can’t be changed half-way through a trial.

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

• Medical research >> Clinical Trials >> 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 >> Long term conditions >> Danny - Interview 26 >> Danny put her tablets into a dosage box from a previous trial. Staff were very concerned that unused tablets were out of the original packets. If this

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 >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> 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 >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> EastEnders missed an opportunity to include clinical trials in a story about breast cancer. But awareness still needs raising among health professiona

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 >> Caroline - Interview 08 >> Caroline sees it as the job of ethics committees to protect patient interests. Ideally you want patient involvement, but it’s a complicated field, eve

Caroline’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.

• Medical research >> Clinical Trials >> Organising trials >> Lester - Interview 06 >> Lester first found out about trials after his son died of CJD (Creutzfeldt-Jakob Disease) and families were consulted about research into the conditio

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 >> Screening, prevention other medical interventions >> Rosamund - Interview 18 >> Involving people in research can seem tokenistic, but it’s still useful to have comments on leaflets and questionnaires to make them more understandab

Rosamund is taking part in a large trial testing the effectiveness of screening for ovarian cancer. She is in the control group, so she has no screening tests but completes regular questionnaires.

• Medical research >> Clinical Trials >> Appointments, monitoring, questionnaires >> Appointments, monitoring, questionnaires

Appointments, monitoring, questionnaires

• Medical research >> Clinical Trials >> Funding and publishing trials >> Funding and publishing trials

Funding and publishing trials

• 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?