Over the past two years, Christopher Limb has been involved in the development and management of the Research Registry, a global platform for research registration designed and run by clinicians to meet the needs of the research community. In this guest blog, he explains how the Research Registry works and why it supports the AllTrials campaign.
While the ethical imperative for research registration has been recognised by numerous authorities and enshrined in the 2013 Declaration of Helsinki, less than 10% of observational studies are currently being registered. For some researchers, it seems, registration still appears to be a daunting challenge.
From personal experience, I know that registering research is not always as easy as it should be, especially for those trying for the first time. Although existing platforms may be suitable for large trials, which often receive significant funding and may have full time researchers pushing the project forward, some registries are hard to navigate by individuals or groups running small projects of their own.
This incompatibility between research registers and those needing to use them first led to thoughts of developing a register tailored to fit the needs of such researchers: thus the Research Registry was born. The driving principle was to develop a service that would match the needs of the research community as a whole: easy and intuitive to use, free at the point of use and with immediate recognition, while maintaining a clear level of quality. It was developed throughout 2014, with data points created based around the World Health Organization minimal data set, and first launched in February 2015.
The process of registration has been kept very simple: from homepage to submission is three mouse clicks. To allow researchers immediate access to a reference number we have put in place a retrospective approach to curation. After submission, entries are reviewed on a weekly basis by a team of curators, allowing removal of inappropriate and inadequate entries to maintain quality.
The Research Registry has significant backing from the scientific community. It was endorsed by the IDEAL collaborative in April 2015 and was recently listed by Britain’s Health Research Authority as a place where research can be registered. Many academic journals have already made registration of the research underlying submitted papers mandatory; the International Journal of Surgery (IJS), IJS Case Reports, IJS Open, and Annals of Medicine and Surgery direct authors of unregistered research to the Research Registry to facilitate this.
To date we have registered over 1,300 studies, involving over four million patients from over 80 countries. The majority of studies that have been registered are exactly those that did not fit within the scope of previous registries, but a significant number of higher-level studies such as randomized controlled trials and systematic reviews have also been registered. Thus the Research Registry’s unique position has filled a gap in research registration facilities. Our biggest challenge going forward will be raising awareness so that no research involving human participants remains unregistered, and to promote investigators to make use of it as a tool during research development and not just to meet requirements at submission.
Registering research strengthens the methodology of research and can help to fill gaps in knowledge. It also allows the medical research community as a whole to move from its current ineffective scattergun approach towards a more focused and effective way of allocating time and resources. Therefore, the Research Registry supports the AllTrials campaign and its call for all trials to be registered, and all results to be reported.