PRIORITY II is a research project that aims to identify the most important things that we currently don’t know about things that affect whether people stay involved in trials. This is important because trial teams work out the number of participants they need for a trial to produce meaningful results. If lots of people drop-out of the trial early, then the trial results may become unreliable or unstable.
The project will start with a survey, which 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 (see below for an explanation of what trials are). Most trials collect data from participants as part of their continued involvement in the trial and will help to answer whether one treatment is better than another. This is known as “follow-up”. Some trials collect data long after the treatments being tested have been given.
Retention refers to the number of people staying involved or “followed up” in trials and whether they complete or provide all the measurements 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 cannot be followed up, the trial results may be inaccurate and misleading which wastes vital research time and money.
We want your help in improving the future of clinical trials by improving what we know about the best ways to encourage people to stay involved in clinical trials.
Working in association with the James Lind Alliance, this Priority Setting Partnership (PSP) aims to:
- bring patients and clinicians together to identify uncertainties in the field of methods of retention to clinical trials;
- agree by consensus a prioritised 'Top 10' list of those uncertainties, for research;
- publicise the methods and results of the exercise;
- disseminate the results to research funders, independently of the JLA.
This PRioRiTy II Priority Setting Partnership (PSP) will specifically identify and prioritise stakeholders specific research questions relating to retention in clinical trials.
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Katie Gillies: firstname.lastname@example.org