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The YOUth Cohort Study

     

Project summary

To understand why some children grow up to be healthy, thriving adults, while other children do not, we need high quality, large, longitudinal, and broad data sets on brain and behavioral development of children. The YOUth Cohort Study started collecting such a data set in 2013, and makes these data accessible for GDPR-compliant use in scientific research. 

YOUth provides an extensive longitudinal data set on brain and behavioural development from two cohorts: 

  • Baby & Child (pregnancy - 7 years, n > 2800)
  • Child & Adolescent (8 - 16 years, n > 1350)

The data set includes a wide variety of different data types, including: 3D-ultrasound sweeps of the foetal brain, eye-tracking, EEG, (f)MRI, computer tasks, cognitive measurements and parent-child observations; a broad range of questionnaires on behaviour, personality, health, lifestyle, parenting, child development, use of (social) media and more, and (umbilical) blood samples, buccal swabs, saliva and hair samples.

Social impact

Transparent research conducted with large sample sizes and high quality data results in more reliable research results, translating into reproducible and verifiable knowledge transferrable to society. In addition, optimal use of data contributes to practicing more sustainable science as it translates into more efficient investment of time and energy by research participants and staff, and investment of (public) funds and other resources.

FAIR objectives

From the start, we realized that to optimize the value of this data set, the data needed to be FAIR. However, the YOUth data are complex and sensitive by nature. We therefore developed a data-infrastructure for secure storage and sharing of complex, sensitive data, called Yoda. This platform is now used across University Utrecht and beyond. We worked together with IT services, the university library, the legal department, privacy officers, and researchers to take all the steps of GDPR compliance, governance, and data request procedures. We have added an online data request module as an extension to Yoda, making data access easier for researchers and data managers. 

We believe YOUth can be an example: if we can make our complex and sensitive data FAIR, others should be able to make their data sets FAIR too. However, such an enterprise can only be accomplished as a team: through collaboration between scientific personnel and support staff from various disciplines. 

Read more

To find out more about the development of Yoda, have a look at our article FAIR, safe and high-quality data: The data infrastructure and accessibility of the YOUth cohort study.

FAIR elements involved

Findable

Accessible

Interoperable

Reusable

 

Key facts

  • YOUth has been awarded the Dutch Data Prize at the FAIR Data Day 2022 
  • More than 4000 children from the general population and their parents participate in YOUth 
  • YOUth developed Yoda, a data infrastructure to securely store and share complex and sensitive data - YOUth fosters transparent, sustainable research with large sample sizes 
  • Data are of high quality: rigorous measurements protocols and data quality control 
  • Data are FAIR and accessible through safe, managed access

Data type

  • Imaging data
  • Biomaterials
  • Questionnaire data
  • Behavioral data
  • Cognitive data

Organizations

  • University of Utrecht
  • UMCU

Funding

NWO

Data champions

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