PeRSEVERE

Invitation to take part in PeRSEVERE consultation survey

We would like to invite you to take part in a consultation on how the right to withdraw informed consent in research should be put into practice. Please feel free to ignore this invitation if it is not relevant to you.

This consultation is part of the PeRSEVERE project (PRincipleS for handling end-of-participation EVEnts in clinical trials REsearch). PeRSEVERE is a collaborative project within the UK Clinical Research Network Registered Clinical Trials Unit Network (https://ukcrc-ctu.org.uk/).

The project aims to help ensure that the right to withdraw informed consent is put into practice in a way that protects both individual participants’ rights and the quality of research. We have seen that common misunderstandings about the right to withdrawal sometimes lead to:

  • Research participants stopping elements of their participation that they have not said they
    wanted to stop;
  • Research results being less reliable than they might be because less data is available for that
    analysis than might be;
  • Research results being reported less clearly than they might be.

Through a collaboration involving a large group of research professionals and patients, we have developed broad, high-level principles to help achieve the aims set out above. We would now like your views on these principles. We would like your feedback whether or not you agree with our suggestions, and whether or not you agree there is a problem to resolve.

You can give as much or as little time as you like to this survey. If you choose to complete all the questions, it might take you at least 20-30 minutes, but it is possible to move through it much more quickly if you do not have that much time.

You can find the survey link and read more detail before agreeing to take part at:
https://leeds.onlinesurveys.ac.uk/persevere.

The survey has been approved by the University of Leeds School of Medicine Research Ethics (MREC)
Committee (project reference: MREC 20-060).