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Describing the first 2000 registrations to the Research Registry®: A study protocol
Alexander J Fowler1, Chris Limb2, Daniyal J Jafree3
1Critical Care Research Department, Royal London Hospital, London, UK.
The Research Registry® was created to register all human participant studies, addressing the under-registration of observational research. Analysis of the first 2000 registrations will reveal study characteristics and trends over time.
Area of Science:
- Research methodology and data management
- Clinical research ethics and registration standards
Background:
- The Declaration of Helsinki (2013) mandates registration for human participant research.
- Existing registries primarily focus on clinical trials, leading to an estimated 90% under-registration of observational studies.
- The Research Registry® was established to provide a comprehensive registration platform for all study types involving human participants.
Purpose of the Study:
- To analyze the characteristics of the first 2000 registrations to the Research Registry®.
- To identify trends and changes in study registration over time.
- To assess the quality and funding sources of registered studies.
Main Methods:
- Data collected using a modified World Health Organisation minimum data set since 2015.
- Weekly curation to remove inappropriate or duplicate registrations.
- Calculation of a quality score for each registration by two independent teams, with inter-rater reliability assessment.
- Analysis of funding sources for registered studies.
Main Results:
- Presentation of the demographic and methodological characteristics of the initial 2000 registrations.
- Analysis of how these characteristics have evolved since the registry's inception.
- Summary of inter-rater reliability for registration quality assessment.
- Overview of funding landscapes for registered research.
Conclusions:
- The Research Registry® provides a valuable resource for tracking global research trends.
- Understanding registration patterns can inform future research policies and funding strategies.
- The registry aims to improve transparency and accessibility in human participant research.
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