FAIR, safe and high-quality data: The data infrastructure and accessibility of the YOUth cohort study

Abstract

The YOUth cohort study aims to be a trailblazer for open science. Being a large-scale, longitudinal cohort following children in their development from gestation until early adulthood, YOUth collects a vast amount of data through a variety of research techniques. Data are collected through multiple platforms, including facilities managed by Utrecht University and the University Medical Center Utrecht. In order to facilitate appropriate use of its data by research organizations and researchers, YOUth aims to produce high-quality, FAIR data while safeguarding the privacy of participants. This requires an extensive data infrastructure, set up by collaborative efforts of researchers, data managers, IT departments, and the Utrecht University Library. In the spirit of open science, YOUth will share its experience and expertise in setting up a high-quality research data infrastructure for sensitive cohort data. This paper describes the technical aspects of our data and data infrastructure, and the steps taken throughout the study to produce and safely store FAIR and high-quality data. Finally, we will reflect on the organizational aspects that are conducive to the success of setting up such an enterprise, and we consider the financial challenges posed by individual studies investing in sustainable science.

Keywords: Cohort study; Data infrastructure; FAIR data; Information technology; Open science; Research data management.

Fig. 1

Overview describing the systems composing the infrastructure and the flow of data through these systems. Note that metadata of all the data are stored in the RDP and that the RDP sources these metadata from the repositories in which the data are held. The RIA→RDP metadata pipeline represents the use of a pre-existing metadata connection between these systems, capable of extracting additional useful metadata computed by the RIA. Abbreviations: CRC = Child Research Center; UMCU = University Medical Center Utrecht; SLIM = Study Logistics and Information Manager; RO = Research Online; RDP = Research Data Platform; WUR = Wageningen University; RIA = Research Imaging Architecture.