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Mapping of Data-Sharing Repositories for Paediatric Clinical Research—A Rapid Review

Lookup NU author(s): Becca LearyORCiD, Victoria HedleyORCiD, Dr Anando SenORCiD, Avril PalmeriORCiD

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

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.


Publication metadata

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

Data Access Statement: The following items have been reported in the Supplementary Materials. https://www.mdpi.com/2306-5729/9/4/59#app1-data-09-00059 No further data are available to share.


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Funding

Funder referenceFunder name
777389IMI Joint Undertaking
EFPIA
European Union Horizon 2020
Innovative Medicines Initiative 2 Joint Undertaking

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