The Research Registry: Advancing the Cause of Research Registration

Leading up to Evidence Live 2016, we will be publishing a series of blog posts highlighting projects, initiatives and innovative ideas from future leaders in evidence based medicine.
Please read on for the second in the series from Daniyal Jafree of UCL.
If you are interested in submitting a blog post, please contact alice.rollinson@phc.ox.ac.uk. Stay tuned! 

How often do you register your research study on a publicly accessible database? The importance of research registration is summarised by the World Health Organisation (WHO) International Clinical Trials Registry Platform (1). Research registration increases transparency, identifies publication bias and selective reporting, avoids duplication, enables identification of flaws in study design early in the research process, facilitates collaboration and may encourage patient recruitment. So it is not surprising that registration is considered a responsibility for researchers.

The concept that research registration should be confined to randomised-controlled trials was dissolved by the 2013 update of the Declaration of Helsinki, stating that: “Every research study involving human subjects must be registered in a publicly accessible database before recruitment of the first subject”. A number of registries exist which enable the registration of various study types. However, given that the number of observational studies published over the last two decades is much greater than the number of registrations, it is estimated that over 90% of observational studies remain unpublished (2). There also appears to be no comprehensive data on the registration of audits, quality improvement projects, case reports or case series. Assuming that not all studies performed are published, how is it then possible to learn from the results of unpublished studies to improve clinical practice?

In February 2015, we launched the Research Registry: enabling free prospective or retrospective registration of any research study involving human participants (2). Research Registry was created by Mr Riaz Agha, a Specialist Trainee in Plastic Surgery and doctoral student at Oxford University. The registry was designed using the WHO dataset for registration of clinical trials. It only takes a few minutes to register your study. We also curate Research Registry using a system based on Sir Austin Bradford Hill’s criteria for what a research study should convey (3).

At 11:30am on Friday 24^th June at Evidence Live 2016, I will describe the conception of Research Registry and presenting our analysis of the first 500 registrations. Approximately 1.77 million patients were enrolled across registered studies. Registration were received from 57 different countries, and a high proportion of registrations were observational studies, case series and case reports. During the talk I will also describe how we curate Research Registry, and how as a result, the quality of registrations has significantly improved over time. Please do come along at 11:00am to Lecture Theatre 2, The Andrew Wiles Building, Maths Institute for more information.

Daniyal Jafree