What will happen to my samples or information about me during and after the trial? Will others be able to look at it or use it for further research?

 

If you agree to join a trial, some people will need to be told that you are taking part. These people are:

  • Your GP, who is responsible for your healthcare on a day-to-day basis
  • The doctor and research team looking after you in the trial

The fact that you are taking part in a trial will be written in your medical notes. Investigators cannot tell anyone else that you are taking part in a trial unless you give your permission. During the trial, all of the information collected about you will be kept confidential, as with any other medical records. When investigators publish the results of a trial, they are not allowed to include any information that would identify people - your name will not be used in any reports or publications. The clinical trial protocol will define what is to be done with your samples and information. Specific sections within this document will detail for how long samples and information must be kept before they are destroyed. If samples and/or information are to be used further, then this will be either:

  • included in the original trial protocol
  • be part of the informed consent you will sign
  • be written up in a specific informed consent which you will also be asked to sign.