MSc

APH - Digital Health APH - Methodology Affiliatie UvA Visiting Fellow, Medical Psychology

Specialization

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

Focus of research

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 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.