Have your say in improving the future of clinical trials

What is this survey about?

The survey aims to collect information from people across the UK and Ireland who are, or have been involved directly, in designing, running, analysing, or taking part and/or staying involved in randomised trials.  A randomised trial is a type of research study that compares groups of people receiving different treatments and looks at which of these improves their health the most. When a person agrees to take part in a randomised trial they are often called a participant.  Participants agree to have data collected about them to help answer whether one treatment is better than another.  Some trials collect data long after the treatments being compared have been given.
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Retention refers to the number of participants staying involved with trials and completing or providing the data that the trial team needs.  For example, the trial may ask participants to return for a study visit or return a questionnaire. This is important because if people join a trial but data are not collected, the trial results may be inaccurate or even misleading which wastes vital research time and money.  Please find an explanation of more research terms here.

We want your help in improving the future of randomised trials by improving what we know about the best ways to encourage trial participants to stay involved in randomised trials.

Who should take part in this survey?
This survey is for completion by people aged 18 or over
We want to hear from:
  • People who have been invited to take part or have taken part in a randomised trial
  • Parents or carers of people who have taken part or been invited to take part in a randomised trial
  • People who have participated in aspects of trials as partners in the research (e.g. helped to secure the funding, members of trial committees, commented on patient information such as leaflets or letters etc)
  • Health professionals and research staff whose work includes encouraging people to stay involved in randomised trials once they have agreed to take part
  • People who have designed, run, analysed, reported on or regulated (e.g. ethics committees) randomised trials
  • Anyone with experience of the methods of randomised trials (i.e. how trials are done). 

If you know people who fit in to these groups, please tell them about this survey so they can complete it too.

What do you need me to do?

Please write as much or as little as you like.  We would like to hear about your experiences.  

All answers will be treated confidentially.  We will not share your personal details with anyone and no one will know who the comments came from.

If you would prefer to give us your answers on paper, please email  k.gillies@abdn.ac.uk and we will send you a paper copy of the survey.

What happens next?

Once the survey is closed to new responders we will list all of the comments and questions provided and then begin a process of putting them in order of priority for further research.  Results will be published in academic journals, newsletters and social media. 
All feedback is important to us, so thank you for your help.

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25% of survey complete.