RECAP Preterm (Research into European Children and Adults born Preterm) is a collaboration between research scientists, clinicians, parent and family representatives, computer scientists, statisticians and project coordinators - between them representing 23 or more very preterm birth (below 32 weeks of gestational age) cohorts and 15 European countries. The project was funded by the Horizon 2020 programme to set up a platform for collaborative analysis that was built using the "DataSHIELD" software stack.
Some examples of the ways I was involved are:
As part of Work Package 7 ("Hypothesis-driven research agenda for child VPT cohorts"), I coordinated a project looking at extremely preterm birth (below 27 weeks of gestation) across different European countries. For this, we used both an individual patient data approach (with a few of the larger cohorts) as well as the DataSHIELD approach to ensure we could include as many cohorts as possible.
Work Package 10 ("Dissemination, Translation and Sustainability") organised a Virtual School about how to use the RECAP Preterm data platform to conduct research on very preterm birth and the consequences. This was held over the summer of 2021; I was on the organising committee, participated in the presentations of some of the modules, and was responsible for facilitating the online web discussion boards. More information, including links to the original course material, is available on the RECAP-Preterm website.
There has been an extensive workload which is still ongoing in harmonising the data from all the cohorts so that they are compatible. This was lead originally by Work Package 3 ("Data mapping and data harmonization") but ongoing coordination has rested with our group at INSERM. All the cohorts that will make data available for analysis via the platform are required to be involved with the harmonisation, consequently progress is slow while a lot of people (including me) are busy with other work.
I was also involved with the Early Career Researchers group, helping to set it up and to organise meetings.
