New guidance on addressing barriers to sharing trial results with participants
03 Apr 2025
We have released guidance which aims to address the barriers to sharing clinical trial results with participants. The guidance document was co-developed by the MRC Clinical Trials Unit at UCL alongside UK clinical research funders.
Research has found that the vast majority of trial participants want to know the results of the studies they take part in. However, most never get to find out. When study teams do share results, this is often done passively, meaning participants are expected to seek out the results for themselves. Furthermore, the information provided is often written for clinical or scientific communities, rather than lay audiences.
Research funders have received feedback from their patient communities that participants are unhappy about not being offered results.
In June 2024, we held a workshop for UK trial funders on sharing trial results with participants. Here, we discussed barriers that can impede the sharing of results with participants and developed recommendations for different stakeholder groups to help address these barriers. The new guidance summarises this discussion and signposts relevant resources and guidance.
More research is needed to inform how trial results should be shared in different trial contexts, populations, diseases and results scenarios, as well as with loved ones of participants who have died, and how to quantify the benefits of sharing results with participants.
However, workshop participants agreed that evidence gaps should not prevent the clinical trials community from taking action on sharing results with participants, as it is the ethically correct thing to do.
The guidance document is available on the NIHR Learning for Involvement website, and will be updated as new resources become available.
Workshop attendees also contributed to a letter published in the journal Trials, which proposes eight principles to guide sharing of results with trial participants.
Both documents were written by representatives from the MRC CTU at UCL, Parkinson’s UK, Versus Arthritis, the Department of Health and Social Care, Wellcome Trust, Prostate Cancer UK, Association of Medical Research Charities, National Institute for Health and Care Research, Cancer Research UK, Alzheimer’s Research UK and the Health Research Authority.
Further information: