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The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types

Agha, R; Fowler, AJ; Limb, C; Al Omran, Y; Sagoo, H; Koshy, K; Jafree, DJ; ... Orgill, DP; + view all (2016) The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types. Frontiers in Surgery , 3 , Article 50. 10.3389/fsurg.2016.00050. Green open access

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Abstract

INTRODUCTION: The Declaration of Helsinki 2013 encourages the registration of all research studies involving human participants. However, emphasis has been placed on prospective clinical trials, and it is estimated that only 10% of observational studies are registered. In response, Research Registry(®) was launched in February 2015; a retrospectively curated registry that is free and easy to use. Research Registry(®) enables prospective or retrospective registration of studies, including those study types that cannot be registered on existing registries. In this study, we describe the first 500 registrations on Research Registry(®). METHODS: Since the launch of Research Registry(®) in February 2015, data of registrations have been collected, including type of studies registered, country of origin, and data curation activity. Inappropriate registrations, such as duplicates, were identified by the data curation process. These were removed from the database or modified as required. A quality score was assigned for each registration, based on Sir Austin Bradford Hill's criteria on what research studies should convey. Changes in quality scores over time were assessed. RESULTS: A total of 500 studies were registered on Research Registry(®) from February 2015 to October 2015, with a total of 1.7 million patients enrolled. The most common study types were retrospective cohort studies (37.2%), case series (14.8%), and first-in-man case reports (10.4%). Registrations were received from 57 different countries; the most submissions were received from Turkey, followed by China and the United Kingdom. Retrospective data curation identified 80 studies that were initially registered as the incorrect study type, and were subsequently correct. The Kruskal-Wallis test identified a significant improvement in quality scores for registrations from February 2015 to October 2015 (p < 0.0001). CONCLUSIONS: Since its conception in February 2015, Research Registry(®) has established itself as a new registry that is free, easy to use, and enables the registration of various study types, including observational studies and first-in-man case reports. Going forward, our plan is to continue developing Research Registry(®) in line with user feedback and usability studies. We plan to further promote Research Registry(®) to advance the cause of registration of research, to increase compliance with the Declaration of Helsinki 2013.

Type: Article
Title: The First 500 Registrations to the Research Registry®: Advancing Registration of Under-Registered Study Types
Location: Switzerland
Open access status: An open access version is available from UCL Discovery
DOI: 10.3389/fsurg.2016.00050
Publisher version: http://dx.doi.org/10.3389/fsurg.2016.00050
Language: English
Additional information: © 2016 Agha, Fowler, Limb, Al Omran, Sagoo, Koshy, Jafree, Anwar, McCullogh and Orgill. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Keywords: Helsinki Declaration, databases, evidence-based medicine, registration, research design
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
URI: https://discovery.ucl.ac.uk/id/eprint/10028191
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