FAIR Data Steward

Would you like to become a professional FAIR data steward? Do you like to work in an international and interdisciplinary setting? Do you want to be part of ambitious European (EU) Projects to stimulate impact and sustainable change in health care systems? Then, this is a role for you!

To connect and improve patient data from hospitals, registries, European Reference Networks (ERNs) and National Health Systems, we seek a data steward to join our consortium and collaborate on activities for Radboudumc. This role offers a dynamic and supportive work environment, perfect for those looking to make a significant impact in the field of rare diseases.

As data steward, you become an expert in the field of data management and interoperability for scientific research. The ideal candidate for this position has experience with the FAIR principles and metadata schema developing to meet the requirements and standards set for and from the scientific domain as well as by the organization. The successful candidate will work in a stimulating medical environment and will actively participate in a European network of experts who collaborate on best data stewarding practices for rare disease data.
You will be applying your technical and soft skills to an incredibly special field of rare diseases, where the number of patients is small by definition. Therefore, the community recognizes the pressing need for the joint analysis of patient data on natural disease history, genetic makeup, disease modifiers and treatment outcomes. However, as 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 are not interoperable.

This role offers the chance to contribute to impactful actions at regional, national, and EU levels through the ERDERA project. You will be joining the Data Service Hub (DSH) Work Stream of the European Rare Diseases Research Alliance (ERDERA), which is a European partnership uniting over 180 public and private organisations across 37 countries around a single goal: turning cutting-edge science into tangible benefits for the thirty million Europeans living with a rare disease. The DSH has 4 Work Packages (WP) that are working towards building FAIR (Findable Accessible Interoperable and Reusable) data by building tools and workflows. On the national level, you will be active in the national mirror group for ERDERA and relevant taskforces from Health-RI.

Role Requirements:

• Strong background in data management, analysis, or bridging IT and healthcare.
• Knowledge of applying FAIR principles.
  Metadata mapping according to Metadata Models.
• Experience with coding standards and ontologies.
• Interest in semantic data modelling, applying ontologies, and federated analysis.

Responsibilities:

• Collaborate with multidisciplinary teams and stakeholders to meet project objectives.
• Address fragmented data issues in rare diseases by ensuring data is well-documented and complete.
• Contribute to EU-funded projects (ERDERA).

Tasks

General

• Contribute to the development of recommendations and guidelines ensuring the interoperability of data structures on local, regional and national level.
• Ensure FAIR data principles adherence across the ERDERA project Work Packages.
• Collaborate with internal and external stakeholders, including consortium partners and governmental agencies if necessary.
• Keep open and effective communication channels with internal and external stakeholders to address concerns and ensure project alignment with expectations.
• Represent the team at events and meetings related to the project, presenting results and raising awareness at local, national and international levels about the importance of FAIR data
• Participate in the FAIR Data Stewards team at the Department of Medical BioSciences (MBS), especially the weekly meetings, sharing updates, doing presentations and brainstorming with the team.

Technical

• Collaborate in projects related to Rare Disease European Reference Networks (ERNs), FAIR data stewardship and European Rare Disease Research Alliance (ERDERA) to harmonise rare disease care and research in Europe.
• Collaborate with rare disease data sharing and analysis.
• Activities in ERDERA data service hub:
• Collaborate with resources to onboarding the Virtual Platform
• Keep track of communication and resource’s needs
• Provide FAIRification services
• Contribute to semantic modelling
• Attend General Assembly and/or Annual Retreat
• Scientific writing: documentation, reports, presentations, articles
• Help with monitoring the relevant tasks of our group at ERDERA project and ensure alignment of project goals at all levels.

What we offer

• Diverse and multicultural work environment very open to international colleagues.
• Flexible / Hybrid work possibilities.
• Opportunities to career development and specialisation / learning.
• Access to great network of experts in FAIR principles.
• Empowerment and independence at your own responsibilities.
• Possibility to research and develop / learn at the job (to tackle low experienced people).