Paediatric-specific content in data standards for health

Affiliations

¹ Department of Women's and Children's Health, University of Liverpool, Liverpool, UK mark.turner@liverpool.ac.uk.
² conect4children Stichting, Utrecht, Netherlands.
³ University of Ghent, Gent, Belgium.
⁴ European Institute for Innovation through Health Data, Gent, Belgium.
⁵ Amsterdam UMC Locatie Meibergdreef, Amsterdam, Noord-Holland, Netherlands.
⁶ John Walton Muscular Dystrophy Research Centre, University of Newcastle upon Tyne, Newcastle upon Tyne, Tyne and Wear, UK.
⁷ CDISC Europe Foundation, Brussels, Belgium.
⁸ CVBF, Pavia, Italy.
⁹ Novartis Pharma, Dublin, Ireland.
¹⁰ Fondazione per la ricerca farmacologica Gianni Benzi onlus, Bari, Italy.

Editorial

Mark A Turner et al. Arch Dis Child. 2025.

. 2025 Feb 19;110(3):177-179.

doi: 10.1136/archdischild-2024-327931.

¹ Department of Women's and Children's Health, University of Liverpool, Liverpool, UK mark.turner@liverpool.ac.uk.
² conect4children Stichting, Utrecht, Netherlands.
³ University of Ghent, Gent, Belgium.
⁴ European Institute for Innovation through Health Data, Gent, Belgium.
⁵ Amsterdam UMC Locatie Meibergdreef, Amsterdam, Noord-Holland, Netherlands.
⁶ John Walton Muscular Dystrophy Research Centre, University of Newcastle upon Tyne, Newcastle upon Tyne, Tyne and Wear, UK.
⁷ CDISC Europe Foundation, Brussels, Belgium.
⁸ CVBF, Pavia, Italy.
⁹ Novartis Pharma, Dublin, Ireland.
¹⁰ Fondazione per la ricerca farmacologica Gianni Benzi onlus, Bari, Italy.

No abstract available

Keywords: Data Collection; Paediatrics; Statistics.

Conflict of interest statement

Competing interests: None declared.

1. GO-FAIR FAIR principles. 2025. https://www.go-fair.org/fair-principles/ Available.
1. Palmeri A, Kalra D, Cornet R, et al. The European Health Data Space needs to be relevant for paediatric data to support future medicines development for children - a conect4children viewpoint. 2024. https://conect4children.org/2024/10/02/the-european-health-data-space/ Available.
1. Owen J, Sen A, Aurich B, et al. Development of the CDISC Pediatrics User Guide: a CDISC and conect4children collaboration. Front Med (Lausanne) 2024;11:1370916. doi: 10.3389/fmed.2024.1370916. - DOI - PMC - PubMed
1. Palmeri A, Leary R, Sen A, et al. FAIR Cookbook. Elixer; 2023. Creating a metadata profile for clinical trial protocols.https://faircookbook.elixir-europe.org/content/recipes/interoperability/... Available.
1. Sen A, Hedley V, Degraeuwe E, et al. Learning from conect4children: A Collaborative Approach towards Standardisation of Disease-Specific Paediatric Research Data. Data (Basel) 2024;9:55. doi: 10.3390/data9040055. - DOI