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.

YOUth 队列研究旨在成为开放科学的开拓者。 YOUth 是一个大规模的纵向队列，追踪儿童从妊娠期到成年早期的发育过程，通过各种研究技术收集了大量数据。数据通过多个平台收集，包括乌得勒支大学和乌得勒支大学医学中心管理的设施。为了促进研究组织和研究人员适当使用其数据，YOUTH 旨在生成高质量、公平的数据，同时保护参与者的隐私。这需要一个广泛的数据基础设施，由研究人员、数据管理员、IT 部门和乌得勒支大学图书馆共同努力建立。本着开放科学的精神，YOUth 将分享其在为敏感队列数据建立高质量研究数据基础设施方面的经验和专业知识。本文描述了我们的数据和数据基础设施的技术方面，以及整个研究过程中为生成和安全存储公平和高质量数据而采取的步骤。最后，我们将反思有利于成功建立这样一个企业的组织方面，并考虑投资于可持续科学的个人研究所带来的财务挑战。