Published on behalf of Robin Packer
Over the last year, there has been a growing demand for increased transparency in clinical trials. The increasing momentum is demonstrated by the launch of the AllTrials initiative in January 2013, calling for all clinical trials – past and present – to be registered and their results reported, and further by the recent report by the UK Parliament Science and Technology Committee, which calls for the UK to stand up and show the world how greater transparency might one day be applied at a global level.
BioMed Central continues to support efforts to increase transparency through our policy to require registration of all clinical trials, the publication of negative results and unfinished studies, and the ISRCTN registry service. ISRCTN allows users to search, register and share information about clinical trials, and complies with the requirements set out by the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) and the International Committee of Medical Journal Editors (ICMJE) guidelines, including the WHO 20-item Trial Registration Data Set.
We believe that a clear, plain-English summary should be a key requirement of trial registration, in order to make trial information more accessible and understandable to the general public. This has been previously discussed in a short article published in the journal Trials. The National Institute for Health Research (NIHR) Journals Library asks authors to provide a plain English summary in keeping with their commitment to accessibility, and the Cochrane Library won an award for their plain language summaries from the Plain English Campaign in 2012.
The UK Clinical Trials Gateway (UKCTG) website draws on trial records from registers including ISRCTN, and aims to provide both patients and the general public with easy-to-understand information in order to provide opportunities for people to participate in trials. Since June 2011, in order to support research funders and the UKCTG in achieving their aims, the ISRCTN register has asked trial researchers to provide a plain English summary of their trial, or to refer to an existing online summary such as those produced by CancerHelp UK and the MRC Clinical Trials Unit, as part of the registration process. Now, around 2000 of our trial records include a plain English summary.
ISRCTN is now asking all users, from researchers and clinicians, to patients and carers, to take a short survey to tell us your opinion about these plain English summaries. Every summary includes a link to this survey to allow users to share their feedback. We would like to know whether our summaries are clear and understandable for non-experts. This short survey only takes a couple of minutes and your answers will help us to improve the quality of information in the ISRCTN database for patients, their families, and other members of the public. Ultimately, you’ll be helping everyone to understand clinical trials more easily.