FAIR Data Steward 'European Joint Programme on Rare Diseases'

FAIR Data Steward 'European Joint Programme on Rare Diseases'

Published Deadline Location
21 Nov 4 Dec Nijmegen

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Job description

Would you like to contribute your data skills to the better understanding of rare diseases and to educate yourself in FAIR data stewardship? Do you like to work in an international setting? Then, this is the job for you!

As the number of rare disease patients is small by definition, there is a pressing need for the joint analysis of patient data on natural disease history, genetic makeup, disease modifiers and treatment outcomes. However, the available data is fragmented across different care providers, registries, and countries, and cannot be used to their full potential because data get lost, are not associated with descriptive metadata, or miss essential details on the way they are produced. To fix that, the research community has adopted the FAIR principles, worldwide. They say that data should be Findable, Accessible Interoperable, and ultimately Reusable.

We believe that the FAIR data principles should be implemented to datasets with the potential to be linked to others and to be federated and analysed. To increase the FAIRness of data in a European Rare Disease Project, we are looking for a data steward!

We took important first steps in the development of interoperable rare disease patient registries, based on the FAIR principles, facilitating joint analysis of patient data from multiple registries. We are now looking for an enthusiastic and ambitious data steward, who will support the onboarding team in the European Rare Disease project. This includes onboarding to the virtual platform different rare disease data, such as clinician and patient-reported outcomes and health questionnaire data in other use cases. This will unlock the data for use in clinical patient management, research and improvement in quality of care.

You will develop data models and tools to capture FAIR data at the source (i.e. where the data are generated or analysed) and facilitate the publication of research data in FAIR Data Points and registries. A specific focus will be on the joint analysis of data from clinical registries and patient-reported outcomes. You will work in the context of EJPRD and be in close contact with the data stewards on other projects (Health-RI, Healthy data, X-Omics) and in other regional nodes with highly similar goals.

You become the expert in the field of data management and interoperability for scientific research and act as a point of contact for several resources that want to get connected to the European Virtual Platform for Rare Disease Resources.

Tasks and responsibilities
  • Collaborate with Rare Disease European Reference Networks (ERNs), FAIRification stewards, and European registry initiatives to ensure FAIR data principles adherence.
  • Receive formal training on FAIR principles through tutorials and mentoring by colleague data stewards.
  • Establish connections with existing ERN registries and the Rare Diseases Platform.
  • Participate in and report on FAIR data stewardship developments to the EJPRD onboarding team.
  • Represent the onboarding team at events related to Rare Diseases registries.
  • Report progress on onboarding and FAIRification of registry projects to leadership.
  • Familiarize with data management, including drafting data validation and management plans.
  • Develop shared work processes and standards for FAIR data.
  • Raise awareness at national, regional, domain, and local levels about the importance of FAIR data.
  • Engage with clinicians and researchers, providing support and training in FAIR data management.
  • Co-develop software, tools, services, SOPs, and policies for FAIR data capture and publication.
  • Participate in (inter)national data stewardship discussion groups and initiatives.


Radboud University Medical Center (Radboudumc)


Our ideal candidate for this position has experience with the FAIR principles to meet the requirements and standards set for and from the scientific domain as well as by the organization. You will work in a stimulating medical environment with a European dimension and will actively participate in an international network of experts who collaborate on best data stewarding practices for rare disease data. In this position you have access to great network of experts in FAIR principles, empowerment and independence at your own responsibilities and the possibility to research and develop / learn at the job.

In addition you possess the profile below:
  • MSc or PhD in a relevant discipline such as public health, medical informatics, data science, biology, bioinformatics, computer science, artificial intelligence.
  • Endorse the FAIR principles and Open Science.
  • Experience with (meta)data modelling and knowledge of formal data representations and frameworks (e.g. FHIR, ODHISI, ODL, SIO, DCAT).
  • Ontology, Thesaurus, Semantic web / linked data skills preferred (e.g. OWL, RDF, ShEx, RML).
  • Ability to work in multidisciplinary teams.
  • Excellent writing and verbal communication in English (Dutch is a plus).
  • Ambition to participate/present in (inter)national conferences/congresses, academic writing skills.

Conditions of employment

Fixed-term contract: 1 year with possible extension.

Working at Radboud university medical center means that you are ahead of the curve and working together on the healthcare of the future. And there is more. Our secondary terms of employment are impressive. These are fully tailored to you thanks to our Employment Conditions Selection Model. At Radboud university medical center, you will be given trust, and you will take the responsibility to handle everything together.
  • A gross monthly salary between € 3.514 and € 4.817 (scale 9) based on full-time employment.
  • An annual vacation allowance of 8% and an end-of-year bonus of 8.3%.
  • If you work irregular hours, you will receive an allowance.
  • As a full-time employee (36 hours per week), you are entitled to approximately 168 vacation hours (over 23 days) per year.
  • Radboud university medical center pays 70% of the pension premium. You pay the rest of the premium with your gross salary.
  • Discount on your supplementary health insurance. You can make use of two collective health insurance policies: UMC Health Insurance and CZ Collective. They offer many extras to stay vital and healthy, such as a prevention budget, workshops, and apps.
  • We provide annual courses, both professional and personal.

In addition to our terms of employment, we also offer employees various other attractive facilities, such as childcare and sports facilities. Want to learn more? Take a look at the CAO UMC.



The Department of Medical BioSciences focuses on basic and translational research in the medical biosciences, from molecules to humans, to better understand disease and health and improve diagnostics and treatment. The active group of data stewards in the department is committed to the reusability of data, tools, and services, and puts the FAIR (Findable, Accessible, Interpretable, Reusable) data principles into action.

The European Joint Programme on Rare Diseases (EJP RD) is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. We support rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high quality research into effective treatments.


  • IT
  • Health
  • max. 36 hours per week
  • €3514—€4817 per month
  • University graduate
  • 189086-P1371937-1


Radboud University Medical Center (Radboudumc)

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Geert Grooteplein-Zuid 10, 6525 GA, Nijmegen

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