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

Appointments, monitoring, questionnaires

• Medical research >> Clinical Trials >> Communication between different health professionals >> Communication between different health professionals

 

Communication between different health professionals

• Medical research >> Clinical Trials >> Side effects and queries >> Side effects and queries

Side effects and queries

• Clip
• Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> The trial involved a home visit from a researcher and a follow-up questionnaire.

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 >> Long term conditions >> Sarah - Interview 38 >> The trial staff said they’d make sure Sarah’s GP was told that she had osteoporosis. Later she discovered he had no record of it, so she feels she mis

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 - Non-randomised studies >> Julian - Interview 33 >> He has sometimes picked up mistakes in the letters sent to his GP from the trial. This is a good reason for patients to see copies of the letters.

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 >> Sabiha - Interview 19 >> 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 >> Clinical Trials >> Long term conditions >> David - Interview 34 >> The offer of a generous expenses package was attractive to David, though looking back he feels it was fair compensation for his time and effort.

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 >> Screening, prevention other medical interventions >> Sabiha - Interview 19 >> 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 >> 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 >> Cancer - Non-randomised studies >> Pam - Interview 21 >> Pam finds her regular scans reassuring. Talking to fellow patients helps keep her spirits up, and the nurses are very encouraging. Hospital feels like

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 >> Long term conditions >> Harry - Interview 07 >> Harry had regular monitoring tests. Most staff were excellent, but one nurse started a debate with him and made him cross. That didn’t seem a good way

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 >> 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 >> Cancer drugs and radiotherapy - randomised trials >> Celia - Interview 12 >> 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 >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he was in expert hands.

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 >> Wendy - Interview 02 >> When the trial finished, she felt vulnerable and worried whether the cancer would return. Having six months extra treatment in the trial felt like ‘an

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 >> Joanna - Interview 04 >> It was reassuring to discover she could ask to come back for further ovarian cancer screening after the trial ended.

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 >> Tom - Interview 14 >> 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 >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> 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 >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> 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 >> Clinical Trials >> Long term conditions >> 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 >> Celia - Interview 12 >> 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.