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

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.

Self-compassion in somatoform disorder.

'Third wave' cognitive-behavioral therapies have given a boost to the study of resilience factors, such as self-compassion. To get an indication of the potential clinical relevance of self-compassion for somatoform disorder, this study examined whether self-compassion in patients with somatoform disorder is lower than in the general population, and whether self-compassion is associated with number of symptoms and health-related quality of life. Two-hundred-and-thirty-six participants with somatoform disorder and 236 subjects from the general population, matched on sex and age, filled out questionnaires regarding self-compassion (SCS), number of symptoms (PSC) and health-related quality of life (EQ-5D). The difference in self-compassion between the patient group (Mean 3.53, SD .96) and the general population (Mean 4.16, SD .98) was significant with a medium effect size (d = -.65). Multiple regression analyses showed that having a somatoform disorder and low self-compassion were independently associated with number of symptoms and reduced health-related quality of life. The lower level of self-compassion in somatoform disorder and its association with more physical symptoms and lower health-related quality of life, indicate that self-compassion is a potential clinically relevant factor that may influence therapy outcome and that can be a therapeutic target in patients with somatoform disorder.