Conducting an Epidemiologic Study and Making It FAIR: Reusable Tools and Procedures from a Population-Based Cohort Study

Stud Health Technol Inform. 2023 May 18:302:871-875. doi: 10.3233/SHTI230292.

Abstract

Conducting large-scale epidemiologic studies requires powerful software for electronic data capture, data management, data quality assessments, and participant management. There is also an increasing need to make studies and the data collected findable, accessible, interoperable, and reusable (FAIR). However, reusable software tools from major studies, underlying such needs, are not necessarily known to other researchers. Therefore, this work gives an overview on the main tools used to conduct the internationally highly networked population-based project Study of Health in Pomerania (SHIP), as well as approaches taken to improve its FAIRness. Deep phenotyping, formalizing processes from data capture to data transfer, with a strong emphasis on cooperation and data exchange have laid the foundation for a broad scientific impact with more than 1500 published papers to date.

Keywords: FAIR; cohort study; data quality; quality management; web applications.

MeSH terms

  • Cohort Studies
  • Data Management*
  • Epidemiologic Studies
  • Humans
  • Research
  • Software*