Making cohort data FAIR

Cohort studies, which recruit groups of individuals who share common characteristics and follow them over a period of time, are a robust and essential method in biomedical research for understanding the links between risk factors and diseases. Through questionnaires, medical assessments, and other interactions, voluminous and complex data are collected about the study participants. While cohort studies present a treasure trove of data, the data is often not FAIR (findable, accessible, interoperable and reusable). First, due to the sensitive and private nature of medical information, cohort data are often access controlled. Due to the lack of information about the studies (metadata), often one needs to dig deep to know what data is available in a cohort study. Therefore, many cohort datasets suffer from the findable and accessible issues. Second, often data collection is performed with instruments and data specifications tailored to the study. As a result, combining data across cohorts, even ones with similar characteristics, is difficult, making interoperability and reusability a challenge. In this presentation, we will explore several informatics techniques, such as the use of ontology, to make cohort data more FAIR. We will also consider the implications of making cohort data more open and the ethical and governance issues associated with open science benefit sharing.

This webinar is part of the “How FAIR are you” webinar series and hackathon, which aim at increasing and facilitating the uptake of FAIR approaches into software, training materials and cohort data, to facilitate responsible and ethical data and resource sharing and implementation of federated applications for data analysis.

The CINECA webinar series aims to discuss ways to address common challenges and share best practices in the field of cohort data analysis, as well as distribute CINECA project results. All CINECA webinars include an audience Q&A session during which attendees can ask questions and make suggestions. Please note that all webinars are recorded and available for posterior viewing. CINECA webinars include an audience Q&A session during which attendees can ask questions and make suggestions.

This webinar took place on 17th February 2021 and is part of the CINECA webinar series. It is best viewed in full screen mode using Google Chrome.

Scientific topics: Data management, Data integration and warehousing

Keywords: FAIR data, Cohort data, Ontologies, Standards

Resource type: Video

Difficulty level: Beginner

Authors: Will Hsiao, Marta Lloret Llinares

Making cohort data FAIR https://tess.elixir-europe.org/materials/making-cohort-data-fair CINECA webinar about how to make data from cohort studies FAIR Data management Data integration and warehousing FAIR data, Cohort data, Ontologies, Standards