Patients perspectives of clinical trials.

• Research type

  Research Study

• Full title

  A qualitative study exploring the views of people affected by myeloma who are on or have been on national trials to compare drug treatments; what are the benefits, what are the drawbacks and what improvements could be made to make them want to take part in future trials?

• IRAS ID

  190875

• Contact name

  Ceri Bygrave

• Contact email

  ceri.bygrave@nhs.wales.uk

• Sponsor organisation

  Cardiff and Vale Local Health Board

• Duration of Study in the UK

  0 years, 3 months, 21 days

• Research summary

  The myeloma team at the university Hospital of Wales intend to carry out a qualitative study investigating the views of people affected by myeloma regarding their role in national research trials. National clinical trials are often offered to people when they are diagnosed with myeloma or when they relapse to enable a comparison of different drugs or drug combinations. Involvement in trials is essential to move knowledge forward and improve the variety and choice of drugs available. However, the views of people with myeloma that take part in these drug trials are not currently being explored. It is not known if people themselves feel the experience has been worthwhile or if they feel it could be improved on. This project wishes to address this issue by engaging with people who are taking part in these trials themselves.
  Once ethical approval is obtained, all patients who have participated on a national myeloma trial within the last 5 years at the University Hospital of Wales will be sent by post a questionnaire and information sheet inviting them to take part. There are approximately 60 people on the Clinical Nurse Specialist database who can be included in the study, we aim to recruit 40 patients. The questionnaire will consist of open ended questions and an invitation to take part in a face to face interview. Between 5 - 10 of these participants will also take part in a face to face interview of approximately one hour each. All patients will be offered the chance to take part in this section and places allocated on a first come first served basis.

  The research will be written up and shared with others, with the ultimate aim of improving the experience of people with myeloma by influencing future trials as they are being created.

• REC name

  London - Chelsea Research Ethics Committee

• REC reference

  16/LO/0612

• Date of REC Opinion

  12 Apr 2016

• REC opinion

  Further Information Favourable Opinion