Uncovering dark data in cohort studies

Dark data is information that is missing, hidden, or unaccounted for in datasets, which can lead to gaps or inaccuracies in research findings. We, DoY Thriving & Healthy Youth, UMC Child Health, and UU Methods & Statistics, examined dark data patterns in the PROactive cohort study, a longitudinal study of children and adolescents with chronic illnesses at the Wilhelmina Children’s Hospital. This project was funded by the DoY-Child Health Booster Grant 2023.

We created a brochure in which we share the lessons we’ve learned on how to recognize and address dark data in your own (cohort) research. Read and download the brochure below!