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The Many Uses of Data in Public Clinical Trial Registries


Affiliations
1 Institute of Bioinformatics and Applied Biotechnology, Biotech Park, Electronics City Phase 1, Bengaluru 560 100, India
 

Registries were primarily set up to (i) increase the enrollment in trials and (ii) decrease the bias in the published literature. Additionally, scholars have used registry data to answer a wide range of questions, related to: (i) transparency and information dissemination; (ii) healthcare; (iii) science; (iv) biomedical innovation; (v) the ethics of the trial enterprise; (vi) fulfilling regulatory requirements; (vii) the economic implications of clinical studies; (viii) the globalization of the trial enterprise and (ix) holding biomedical journals to account. With the help of numerous examples, I have documented some of these actual, or occasionally potential, uses of registry data. We should be aware of these many uses since they highlight the importance of (a) establishing and maintaining registries, (b) ensuring that trial records are comprehensive and accurate, and (c) funding research on registry data, and facilitating such research in other ways.

Keywords

Clinical Trial, Ethics, Innovation, Registry, Transparency.
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  • The Many Uses of Data in Public Clinical Trial Registries

Abstract Views: 349  |  PDF Views: 119

Authors

Gayatri Saberwal
Institute of Bioinformatics and Applied Biotechnology, Biotech Park, Electronics City Phase 1, Bengaluru 560 100, India

Abstract


Registries were primarily set up to (i) increase the enrollment in trials and (ii) decrease the bias in the published literature. Additionally, scholars have used registry data to answer a wide range of questions, related to: (i) transparency and information dissemination; (ii) healthcare; (iii) science; (iv) biomedical innovation; (v) the ethics of the trial enterprise; (vi) fulfilling regulatory requirements; (vii) the economic implications of clinical studies; (viii) the globalization of the trial enterprise and (ix) holding biomedical journals to account. With the help of numerous examples, I have documented some of these actual, or occasionally potential, uses of registry data. We should be aware of these many uses since they highlight the importance of (a) establishing and maintaining registries, (b) ensuring that trial records are comprehensive and accurate, and (c) funding research on registry data, and facilitating such research in other ways.

Keywords


Clinical Trial, Ethics, Innovation, Registry, Transparency.

References





DOI: https://doi.org/10.18520/cs%2Fv120%2Fi11%2F1686-1691