Shuxin Zhang



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Personal profile

Research interests

My research focuses on facilitating interoperability of rare disease data through Semantic Web technologies, including but not limited to the following:

  1. Quality assessment on rare disease data in Resource Description Framework (RDF);
  2. Data transformation among various health data standards;
  3. Standardization of data dictionaries in the field of rare diseases;

I obtained a Master of Science in Medical Informatics from University of Amsterdam (the Netherlands) in 2019 and a  Bachelor of Science in Pharmacy from Zhejiang University (China) in 2015.

I joined the European Joint Programme on Rare Diseases on October 2019 and have been working as a FAIR data steward supporting European rare disease registries in making their data Findable, Accessible, Interoperable, and Reusable (FAIR) for both humans and machines since July 2020. In addition, I have participated in the modelling of the Semantic Model for the Common Data Elements in rare diseases and its mappings to the Clinical Data Interchange Standards Consortium (CDISC) standards.


Medical Informatics; Semantic Web; FAIR Data; Rare Disease Data; Ontology; Stewardship

Education/Academic qualification

Master, University of Amsterdam

1 Feb 20171 Feb 2019

Award Date: 1 Feb 2019

Bachelor, Zhejiang University

1 Sep 20111 Jul 2015

Award Date: 1 Jul 2015


  • ZA4450 Databases
  • Q Science (General)


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