Key references
Lifecycle-aware evaluation of biomedical data ecosystems
Wilkinson MD et al. The FAIR Guiding Principles for scientific data management and stewardship. Scientific Data, 2016 [1]. The foundational definition of the principles that anchor the scientific-quality framework throughout this paper.
Wilkinson MD et al. A design framework and exemplar metrics for FAIRness. Scientific Data, 2018 [2]. Operationalizes FAIR as machine-measurable indicators, which is what makes automated FAIR-compliance monitoring tractable at the portfolio scale we describe.
Tedersoo L et al. Data sharing practices and data availability upon request differ across scientific disciplines [3]. Provides the bibliometric evidence that fewer than 30% of secondary analyses formally cite source data, the core empirical basis for our argument that citation-count KPIs systematically understate reuse.
The GTEx Consortium. The Genotype-Tissue Expression (GTEx) project. Nature Genetics, 2013 [4]. The paradigmatic example of a high-reuse public biomedical data resource (8,630 citations as of January 2026), used here to anchor the public-value framework with a concrete case.
Centers for Disease Control and Prevention. Standard Evaluation Framework for Large Health Care Data [5]. The 49-attribute fitness-for-purpose framework whose representativeness and linkability attributes are particularly load-bearing for federated ecosystems like the CFDE.