Do you want to be part of ambitious EU Projects to stimulate impact and sustainable change in health care systems? Do you thrive in complex multi-stakeholder environments? Do you wish to make a difference to patients with complex or rare diseases? Then, this is a role for you!

To connect and utilize real-world patient data from 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.

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 miss essential details on the way they are produced.

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 project Work Packages of both ERDERA and JARDIN.
• Collaborate with internal and external stakeholders, including consortium partners and governmental agencies if necessary.
• Provide accurate and timely information on project achievements and challenges.
• 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.

Technical

• Collaborate in projects related to ERNs, FAIR data stewardship, ERDERA and JARDIN to harmonise rare disease care and research in Europe.
• Identify the current barriers to rare disease data sharing and the existing candidate solutions for such. This work is done via data analysis and cross work package collaboration for an EU-wide survey sent to ERNs and their affiliated HCPs via JARDIN.

Collaborate with rare disease data sharing and analysis related tasks in both projects

• Collaborate on (meta)data modelling tasks in ERDERA
• Collaborate on reporting the identified solutions of JARDIN in the first quarter of 2025.
• Collaborate with technical reporting, annual plans, and other EU project requirements.
• Help with monitoring the relevant tasks of our group on both projects and ensure alignment of project goals at all levels.
• Connect results from JARDIN to related tasks in ERDERA.

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 JARDIN and ERDERA, enhancing ERNs' integration into healthcare systems.
• Identify and solve local data flow challenges, facilitating automatic data extraction from EHRs to ERNs.

Our ideal data steward has strong background in data management, analysis, or bridging IT and healthcare. and experience with Electronic Health Record (EHR) systems, data extraction (ETL) processes, coding standards, and ontologies. You are interested in semantic data modelling, applying ontologies, and federated analysis.

Hard skills

• MSc or PhD in a relevant discipline (public health, medical informatics, data science, biology, bioinformatics, computer science, artificial intelligence).
• You endorse the FAIR principles and Open Science.
• Has knowledge of data and metadata standards, are familiar with FAIR data principles.
• Preferably experience with EU projects setting and academia.
• Preferably experience with Rare Diseases.
• Excellent writing and verbal communication in English (Dutch is a plus).

Soft skills

• Curious by nature, proactive and a fast learner who likes the challenge of learning at the job.
• Independent worker.
• Flexible person.
• Good communicator in a non-hierarchical team setting.
• Ability to work in multidisciplinary teams.
• Ability in working with people from multiple cultural backgrounds.
• Ambition to participate/present in (inter)national conferences/congresses, academic writing skills.

Fixed-term contract: 1 year with prospect of extension.

At Radboud university medical center, you build on your future. We are committed to providing the best care, education, and research. And we are true to our word, because we help you develop and seize opportunities and give you the room to grow. As an employer, we believe that employees should feel vital and happy at work in all stages of life. We are also committed to creating a healthy and safe working environment. Our employment conditions contribute to that. What we offer:

• A gross monthly salary between € 3.655 and € 5.010 (scale 9) for full-time employment (36 hours per week). You will also receive an 8% holiday allowance, an 8.3% end-of-year bonus, and, depending on the position, an allowance of 47% to 72% for working irregular hours.
• 176 vacation hours per year based on a 36-hour working week.

Radboudumc

This position is located in the Department of Medical BioSciences (MBS), offering a stimulating medical environment with a European dimension. MBS actively participates in an international network of experts collaborating on the best data stewardship practices for rare disease data.

This role offers the chance to contribute to impactful actions at regional, national, and EU levels through the JARDIN and ERDERA projects. These initiatives aim to integrate ERNs into healthcare systems across EU member states by addressing data flow challenges and collaborating with IT departments to implement solutions. The goal is to facilitate automatic data extraction from EHRs to ERNs and improve the health and well-being of 30 million people with rare diseases in Europe by enhancing research, innovation, and patient outcomes.

Team Environment:

• Hybrid Data Stewards: You will work in a team of seven data stewards with both technical and non-technical skills, handling tasks from EU projects.
• Open Communication: Our team values open communication, working independently with a low hierarchical structure.
• Proactive Culture: Members are proactive in offering and asking for help, maintaining awareness of each other's workloads.
• Work-Life Balance: Our team supports both personal and professional needs to maintain a healthy work-life balance.
• Diverse Backgrounds: The team prides itself on its diverse academic and cultural backgrounds, known for efficiency and flexibility.
• Work Schedule: Weekly Meetings on Fridays. The team meets every Friday at the office for a social lunch. And there are several online meetings from the EU projects.
• Flexible Remote Work: Apart from Fridays and one other office day, the rest of the week is flexible (remote or office work).
• Facilities: The department has recently renovated offices. Access to cutting-edge technical equipment. Noise-cancelling meeting and working rooms. Shared areas with kitchen appliances, nice reading material and board games for relaxing with colleagues.

Radboudumc
Radboud university medical center is a university medical center for patient care, scientific research, and education in Nijmegen. Radboud university medical center strives to be at the forefront of shaping the healthcare of the future. We do this in a person-centered and innovative way, and in close collaboration with our network. We want to have a significant impact on health and healthcare. We want to improve with each passing day, continuously working towards better healthcare, research, and education. And gaining a better understanding of how diseases arise and how we can prevent, treat, and cure them, day in and day out. This way, every patient always receives the best healthcare, now and in the future. Because that is why we do what we do.

Any questions? Or wondering what it is like to work at Radboudumc? Then email to Bruna dos Santos Vieira, data steward. Use the Apply button to submit your application.