Clinical trials data sharing
Data from clinical trials is a valuable resource for healthcare researchers.
Sharing this data benefits other researchers working on different studies and builds public trust by showing that clinical trials are valuable to healthcare.
The clinical trials data sharing debate
The current debate on accessing clinical trials data focuses on three areas:
- registration of trials
- improved reporting of results
- access to underlying raw data.
As set out in our clinical trials policy, we require all clinical trials we fund to be registered. We also expect researchers to adopt good practices in reporting their research findings, including negative results, in a timely manner.
We believe that data which comes from the clinical trials we fund should be managed and shared in a way that maximises health benefits.
We’re working with the international research community to develop governance mechanisms which enable wider sharing of clinical trial data, while protecting patient privacy.
What we’re doing
We commissioned independent consultants Technopolis to study the types of clinical research that currently use data from trials and the feasibility of a portal to access this data. Read the final report [PDF 4.3MB] and summary [PDF 99KB].
We’re working with the Multi-Regional Clinical Trials Center (MRCT) at Harvard University to increase access to commercial and academic trial data. We held a stakeholder meeting in March 2016 to help shape this work.
Read an article about the work of Clinicalstudydatarequest.com in the New England Journal of Medicine.
Find out more about the AllTrials campaign, which is calling for all past and present clinical trials to be registered and their full methods and summary results reported.
If you have any questions, contact Jennifer O'Callaghan:
Sharing data helps researchers to access and build on new information and knowledge.
Science policy affects a broad range of issues, ranging from data sharing and gene editing, to intellectual property and regulation.