Data Steward

1 year with prospect of extension **_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.

**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.
- 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.

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.

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