Chances and challenges in FAIR, open and safe human data

YOUth DataDay

Utrecht University has the ambition to pioneer Open Science in Europe. An important aspect is enabling FAIR and open data, but the scientific community is still figuring out how to do this. 

For human data it can be particularly challenging to balance safety issues with FAIR data. The Utrecht based YOUth cohort aims to be a trailblazer for Open Science. On our YOUth DataDay we will not only share expertise and lessons learned, but also discuss our current challenges in enabling FAIR, open and safe data in the YOUth cohort.


08.30 – 09.00

Registration with coffee and tea

09.00 – 09.25

The FAIR principles: fair enough? By Prof. Annelien Bredenoord, Ethics of Biomedical Innovation UMC Utrecht

09.25 – 09.50

Everything you always wanted to know about the YOUth cohort. By Prof. Chantal Kemner, Scientific director YOUth

09.50 – 10.15

Data safety and internationalization: a dilemma? By Prof. Henk Kummeling, Rector magnificus Utrecht University and  researcher Stijn van Deursen

10.15 – 10.45

Data galore: exploring the breadth of the YOUth data set

10.45 – 11.00

Coffee and tea break

11.00 – 11.25

The Challenges of Open Science and Open Data. By Jacques Flores Dourojeanni, Research Data Management Consultant

11.25– 11.50

Your data, my data, Youth data. Open Science @Utrecht University. By Prof. Frank Miedema, Chairman Open Science Platform

12.00 – 13.00


Data sharing

YOUth is a large-scale, longitudinal cohort study, following children in their behavioural and brain development from pregnancy until early adulthood, with a specific focus on the development of social competence and behavioural control. YOUth researchers collect data with a wide range of instruments from 6,000 babies and children in two different age groups. 

A few examples of YOUth data: human bodily material, hours of videos, MRI images, questionnaires, ultrasounds and IQ scores. YOUth encourages and facilitates data sharing, you can read more about their datamanagement plan here. It is one of the leading large-scale, longitudinal human cohorts in FAIR and open data in the Netherlands.

YOUth is part of the Utrecht University research theme Dynamics of Youth  and part of UMC Utrecht Brain Center.

YOUth cohort study

Start date and time
End date and time
Paushuize, Kromme Nieuwegracht 49, 3512 HE Utrecht

Registration via this form in FormDesk.

More information
YOUth cohort