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Lookup NU author(s): Becca LearyORCiD, Victoria HedleyORCiD, Dr Anando SenORCiD, Avril PalmeriORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
The re-use of paediatric individual patient data (IPD) from clinical trials (CTs) is essential to overcome specific ethical, regulatory, methodological, and economic issues that hinder the progress of paediatric research. Sharing data through repositories enables the aggregation and dissemination of clinical information, fosters collaboration between researchers, and promotes transparency. This work aims to identify and describe existing data-sharing repositories (DSRs) developed to store, share and re-use paediatric IPD from CTs. A desk review of platforms providing access to electronic DSRs was conducted. A two-stage process was used to characterize DSRs: a first step of identification, followed by a second step of suitability assessment using a set of eight purpose-built indicators. From an initial set of forty-five publicly available DSRs, twenty-one DSRs were identified as meeting the eligibility criteria. Only two DSRs were found to be totally focused on the paediatric population. Despite an increased awareness of the importance of data-sharing, the results of this study show that paediatrics remains an area in which targeted efforts are still needed. Promoting initiatives to raise awareness of these DSRs and creating ad-hoc measures and common standards for the sharing of paediatric CTs data could help to bridge this gap in paediatric research.
Author(s): Felisi M, Bonifazi F, Toma M, Pansieri P, Leary R, Hedley V, Cornet R, Reggiardo G, Landi A, D'Ercole A, Malik S, Nally S, Sen A, Palmeri A, Bonifazi D, Ceci A
Publication type: Article
Publication status: Published
Journal: Data
Year: 2024
Volume: 9
Issue: 4
Print publication date: 01/04/2024
Online publication date: 20/04/2024
Acceptance date: 17/04/2024
Date deposited: 02/05/2024
ISSN (electronic): 2306-5729
Publisher: MDPI AG
URL: https://doi.org/10.3390/data9040059
DOI: 10.3390/data9040059
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