The right to stop taking part, or change how to take part
PeRSEVERE has its own website: https://persevereprinciples.org/
All guidelines, policies and laws about clinical trials and other research with human participants are clear that, before taking part in research, individuals must voluntarily give informed consent, and that they can withdraw that consent at any time after having given it, without providing a reason and without negative consequences for them.
In real terms, study participants can therefore stop participating whenever they like. This is more complicated than it sounds, particularly around which parts of the trial an individual stops participating in. For example, could a person stop taking the treatment but keep providing data?
The PeRSEVERE project is about what should happen when research participants stop, reduce or change their involvement in clinical trials and other research studies. Our principles guide everyone involved in managing or preparing for participation changes to do it in ways that do the best by research participants and the studies they take part in.
The PeRSEVERE project began within the UKCRC Registered Clinical Trials Unit Network, and the Network provided some funding to support the project’s patient and public involvement work.
The website and development of the associated resources have been funded by the National Institute for Health and Care Research (NIHR) CTU Support Funding scheme. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Click on the button below to go to the PeRSEVERE website:
