FAIRification stewardship programme for ERN registries

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The EJP RD FAIRification stewards’ team was established to support partners in the EJP RD with the FAIRification process of their resource, starting with the ERN registries. The team is comprised of 6 members from different institutions involved in EJP RD. The stewards’ aims include, but are not limited to, identifying the ERNs needs, providing advice regarding the implementation of a FAIR registry as well as promoting convergence in FAIR implementation choices between the registries and with those of the EJP RD Virtual Platform. The team contributes to the EJP RD R&D through a continuous feedback loop with EJP RD research and development of the platform. The FAIRification stewards complement the local technical team (i.e., the registry developer, the registry project manager) that is responsible for implementing and maintaining their FAIR infrastructure. The stewards can provide them with technical advice related to the FAIRification process or refer them to the EJP RD technical experts upon need. The objective of the FAIRification stewards’ team is to transfer FAIR knowledge in such a way that at the end of EJP RD project, the local technical teams will be able to continue to FAIRify their resources independently.

After a first successful year of existence mostly focused on ERN registries, area of operations of the FAIRification stewards will be extended to other EJP RD resources such as Wikipathways, neXtProt, hpscreg, and Cellosaurus.

The FAIRification stewards’ activities include:

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Useful links

Meet the team

K. Joeri van der Velde
Joeri obtained a bachelor’s degree bioinformatics in 2008, graduating on pathway visualization of kinase activity. He worked as a scientific programmer on web-based databases, methods and visualization tools for various multi-omics research projects involving plants, mice and nematodes. In 2018 he completed his PhD on translational software infrastructure for medical genetics at the University of Groningen. Now, by combining machine learning and data infrastructure research, he aims to revolutionize the speed, yield and applications of molecular decision support systems and bring those innovations into clinical practice where they can truly make a difference. In his work, he is a strong advocate of open source programming, open access science, and FAIR data.
Alberto Cámara
Alberto has a Master’s Degree in Computational Biology from the Technical University of Madrid in Spain. After several experiences with the Semantic Web, knowledge representation, acquisition and data management, Alberto joined the European Joint Programme on Rare Diseases as a Pillar 2 contributor and a FAIRification Steward.
Bruna Dos Santos Vieira
Bruna has over 6 years’ experience working in hospitals and a background in hospital management and public health. She studied Hospital Management at University Feevale (Brazil – 2014) and a Public Health Master’s degree from the University of Porto (Portugal – 2018), focusing on data quality of hospital-based cancer registries. In 2019, she joined the Center for Molecular and Biomolecular Informatics (CMBI) and Medical Imaging departments at Radboudumc (Netherlands) as a FAIR data steward working on the Registry for Rare Vascular Anomalies (VASCA) and European Joint Programme on Rare Diseases (EJP-RD). At EJP-RD, Bruna collaborates with the Metadata WF, FAIRification WF and by leading the FAIRification Stewards.
Shuxin Zhang
Shuxin Zhang is a PhD candidate at Amsterdam University Medical Center focusing on facilitating interoperability of health data, including quality assessment of artefacts in Resource Description Framework (RDF) and data transformation among various standards. He graduated from University of Amsterdam with a MSc in Medical Informatics and from Zhejiang University with a Bachelor’s degree in Pharmacy. He joined the European Joint Programme on Rare Diseases (EJP RD) on October 2019 and has been involved in the modelling of the Semantic Common Data Element (CDE) model and its mapping to CDISC.
Dr. Clémence Le Cornec
Clémence completed a PhD in Transport Studies from Imperial College London (UK -2021) and a Master’s degree in Environmental Engineering from the Ecole Polytechnique Fédérale de Lausanne (Switzerland – 2017). Her PhD focused on real-world variability, modelling and mitigation of road transport emissions. In March 2021, she joined the Universitätsklinikum Heidelberg (Germany) as a Data Scientist working on the ERKReg registry and as a Project Manager for the WP2 of the European Rare Disease Research Coordination and Support Action (ERICA). Clémence joined the FAIRification steward team of EJP RD at the same time.
César Henrique Bernabé
César Henrique Bernabé is from Vitória, Brazil. He received a BSc degree in Computer Science from the Federal University of Espírito Santo in 2017, followed by an MSc degree in Informatics in 2020 from the same university. His master’s research focused on the use of ontologies to improve requirements elicitation methods for software engineering. In 2020, he joined the Biosemantics group at Leiden University Medical Centre as a PhD student, where he is researching FAIR principles and the use of foundational ontologies for translational research, and how methods from Software Engineering can be reused and aid Bioinformatics research. He joined the EJP RD FAIRification Stewards group in July 2020.