FAIR: What Needs to Happen Next?
Zenodo (CERN European Organization for Nuclear Research)
Abstract
This white paper documents an expert roundtable held on 25 June 2026 in Amsterdam, convened by Elizabeth Vroom (World Duchenne Organization) and bringing together FAIR data pioneers, Duchenne community representatives, and researchers to address the question: if FAIR data principles work, why hasn't adoption scaled across the rare disease and Duchenne muscular dystrophy community? Drawing on Barend Mons' macro-level perspective on FAIR's global uptake and the Duchenne Data Platform's (DDP) ground-level FAIRification experience, participants identified six key gaps between FAIR's vision and real-world implementation, including a lack of forcing mechanisms, persistent misconceptions (particularly around data privacy and openness), and lack of guidance in the field of rare diseases. The white paper catalogues human and organisational barriers to adoption, proposes missing stakeholders who should join future discussions (patients, social scientists, investors, policymakers, and others). Lastly, it closes with a shared community vision for FAIR adoption across all 55 DMD/BMD registries worldwide by 2030.
Authors 10
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Radboud University Medical Center
Affiliation as printed
Radboud University Medical Center
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Radboud University Medical Center
Affiliation as printed
Radboud University Medical Center
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Barend Mons Aachen
Leiden University Medical Center
Affiliation as printed
Leiden University Medical Center
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Affiliation as printed
University of Twente
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Marco Roos Aachen
Leiden University Medical Center
Affiliation as printed
Leiden University Medical Center
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Sander van Boom Aachen
Leiden University Medical Center
Affiliation as printed
Leiden University Medical Center
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Affiliation as printed
Dutch Research Council
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Affiliation as printed
World Duchenne Organization
Duchenne Parent Project
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