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

Funding and publishing trials

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• Medical research >> Clinical Trials >> Not taking part in a trial >> Marie - Interview 25 >> Marie did not realise at first the doctor talking to her about the trial worked for a drug company and that the drug company was running the trial, no

Marie was diagnosed with chronic lymphocytic leukaemia in 1992. She was recently invited to take part in a clinical trial of a new monoclonal antibody. At first she thought she would take part but after reading all the details decided against it.

• Medical research >> Clinical Trials >> Not taking part in a trial >> Marie - Interview 25 >> She didn’t like the idea that the trial could be stopped whenever they had enough data. She would have felt like a guinea pig.

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 >> 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 drug company running the trials paid petrol money for people driving to the hospital, but Anthea would have taken part anyway.

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 >> 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 She was worried about side effects, the fact that the drug might be withdrawn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 >> 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 >> 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 drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> Celia argues for more government research funding. She feels drug companies tend to fund research into small refinements to existing treatments, so th

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 >> The costs of developing new drugs are high, so Julian thinks investment from drug companies is inevitable. But it worries him that there are few incen

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 >> Caroline - Interview 08 >> Caroline argues that the research agenda is partly driven by the interests of drug companies and popular charities. As a result preventive medicine an

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 >> Tony - Interview 36 >> Tony thinks there are conspiracy theories about the role of the pharmaceutical industry, but he keeps an open mind and does not begrudge them their pr

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 >> 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 >> 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 >> Long term conditions >> Kate - Interview 13 >> Kate’s charity worked on a study with a drug company, and they found it really difficult to get the results published. She felt the reviewers were pre

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 >> It takes a long time for most trial results to be published. Sometimes when results seem disappointing, researchers may want to carry on, hoping a tre

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 >> 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 >> 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 >> Mental health trials >> Anton - Interview 28 >> A small payment doesn’t worry him, but if you pay too much it may attract the wrong people. When it’s a commercial company running a trial he expects

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

• Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> 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.