Recent publications from researchers affiliated with the CVBF consortium underscore our commitment to advancing efforts in paediatric data standardization.

The paper by Mariagrazia Felisi, Fedele Bonifazi, Claudia Pansieri, Giorgio Reggiardo, Donato Bonifazi, Adriana Ceci and others mapped out existing data repositories for sharing paediatric clinical trial data. Though promoting transparency, their rapid review found only two repositories solely focused on paediatric data out of 21 eligible repositories identified. The authors emphasized more targeted efforts are needed for paediatric data sharing.

In the paper “Learning from conect4children: A Collaborative Approach towards Standardization of Disease-Specific Paediatric Research Data,” authors including Giorgio Reggiardo, Claudia Pansieri, Donato Bonifazi and Fedele Bonifazi, outlined a plan for standardizing disease-specific paediatric clinical trial data. The conect4children initiative has been working with CDISC to develop data standards for paediatric medicines. The researchers reviewed existing initiatives like European Reference Networks and identified a need for collaboration to standardize data across diseases. A paediatric data standards user group was formed to guide efforts like applying metadata standards, piloting phenotype data formats, and testing CDISC’s paediatric guide.

These papers highlight the crucial work to improve data standards and therapies for paediatric patients. Standardized data sharing and new cost-effective treatments will provide substantial benefits for children’s health.