LUCID‑LUMC Guide for FAIR Data Principles

Practical Tools, Applications, and Training for Researchers Working with Sensitive and Federated Data

Leiden, Netherlands, December 2025 – The Chair of FAIR Data Science at LUCID‑LUMC has released a new practical guide titledAdvancing FAIR Open Science in LUCID (LUMC), authored by Prof. Dr. Mirjam van Reisen. This guide offers researchers a hands‑on roadmap for applying FAIR Data Principles in clinical, humanitarian, and interdisciplinary research settings.

The guide is designed to support researchers at Leiden University Medical Centre (LUMC) and its global partners — including AUN‑FOS, EEPA, VODAN‑Africa, and the Digital Governance in Africa programme — in strengthening data stewardship, interoperability, and ethical analytics.

What’s Inside the Guide?

  1. Understanding FAIR Data
  • Origins of FAIR at Leiden University
  • Definitions: FAIRification, FAIR Data Points, Federated Repositories
  • Semantic enrichment and machine‑actionable metadata
  • Ownership, localisation, and regulatory compliance (FAIR‑OLR)
  1. Practical Applications
  • Creation of FAIR Data Points for research datasets
  • Real‑time epidemiological surveillance using federated models
  • Patient data workflows for epidemic preparedness
  • Inclusion of sensitive data from vulnerable populations
  • Humanitarian data stewardship and personal data pods
  1. Tools and Support
  • Access to LUMC’s FAIR Data Point: fdp.lumc.nl
  • Deployment examples from Ethiopia, Kenya, Nigeria, and Uganda
  • GitHub resources and training support from the Chair of FAIR Data Science
  • Interdisciplinary collaboration with LIACS, Tilburg University, and UNA Europa
  1. Curriculum and Capacity Building
  • Training modules for PhD students, clinicians, and data stewards
  • FAIR‑by‑design strategies for humanitarian and clinical data
  • Use cases in GBV reporting, refugee protection, and antenatal care

Why This Guide Matters?

As FAIR Data becomes a cornerstone of global research policy, this guide empowers researchers to:

  • Make their data findable, accessible, interoperable, and reusable
  • Ensure ethical and secure handling of sensitive datasets
  • Participate in cross‑border research collaborations
  • Align with emerging Health and Humanitarian Data Spaces in Africa and Europe

Download the guide

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