Coordinator ERN registries for patients with rare diseases

Coordinator ERN registries for patients with rare diseases

Published Deadline Location
9 May 29 May Nijmegen

You cannot apply for this job anymore (deadline was 29 May 2023).

Browse the current job offers or choose an item in the top navigation above.

Job description

Are you passionate about improving the quality of care for patients with rare diseases? Do you have experience in optimizing processes and coordinating projects? Then we have an exciting opportunity for you!

Radboudumc is a leading medical center in diagnosing and treating patients with rare diseases, and we have a strong focus on building registries with longitudinal data on these patients. Our registries are crucial for establishing care pathways, improving the quality of care, and conducting research into the natural course of the disease.

However, filling these registries with complete and high-quality information is a major bottleneck, and we need your expertise to help us optimize our internal and external processes. As a coordinator, you will work closely with our Information Management department to ensure that we can automatically compile research cohorts from source systems according to FAIR principles.

You will also be responsible for streamlining legal and ethical procedures, training researchers and data managers, and making registry data FAIR. Your efforts will contribute to well-characterized and harmonized patient cohorts that support epidemiological and intervention studies at the European level.

You will work closely with the ERN registry builders in Radboudumc and Europe, as well as with teams working on the disclosure of source data within Health-RI and HealthyData. This is a unique opportunity to be part of a dynamic and innovative team that is dedicated to improving the lives of patients with rare diseases.

If you are a highly motivated and skilled coordinator with experience in project management, legal and ethical procedures, and data management, we encourage you to apply for this position. Join us in our mission to make a difference in the lives of patients with rare diseases.

Please upload a motivation letter, your curriculum vitae and the sectorplan application form that applies to your position. This form will guide you through some questions that are relevant for the selection.


Radboud University Medical Center (Radboudumc)


Are you a solution-oriented individual with a background in clinical research and experience in data management or an experienced data manager/steward with a passion for clinical research? If so, we want you! We are searching for a candidate who is interested in IT systems and can bridge the gap between healthcare providers, researchers, and IT professionals by translating their needs into usable IT solutions.

Not only should the ideal candidate possess strong communication skills and have the ability to communicate with individuals from different disciplines, such as physicians, researchers, IT professionals, and lawyers, but they should also have a proactive approach and a cross-departmental view. Additionally, if you have a passion for caring for patients with rare diseases, knowledge of IT systems such as EPIC and Castor, and experience with AVG/GDPR, we want to hear from you.

If you endorse Radboudumc's core values of commitment, excellence, and teamwork, and preferably have a broad network within the Radboudumc, then this is the perfect opportunity for you. Join our team and help us make a positive impact on patient care and clinical research.

Conditions of employment

Fixed-term contract: 1 year with a possibility for a permanent contract.

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 € 3.230 and € 5.088 (scale 10) based on full-time employment.
  • From 1 November 2023 the wages will increase by 4%.
  • 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.
  • You get a discount on health insurance as well: you can take advantage of two group health insurance plans. UMC Zorgverzekering and CZ collectief.
  • 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.



This position is partly funded by the resources made available by the medical sciences sector plan. With the sector plans, the Ministry of Education, Culture and Science (OCW) intends to make a structural contribution to the cohesion and cooperation between education and research, and to relieve stress and pressure related to science by offering more permanent contracts. In addition, the sector plans contribute to making joint and clear choices in the division of tasks and signatures of the Dutch universities.

Radboudumc fully supports these objectives and has seized this opportunity to strengthen and deepen a number of important existing strategic themes within Radboudumc. These are the themes of prevention, data-driven & Artificial Intelligence (AI), and molecular mechanisms of diseases and new treatments. These themes fit nicely on the thematic foci of the sector plan, namely prevention, data-driven innovation and the path from fundamental research to application. We hope this will not only give an impulse to the research within the Radboudumc, but also strengthen the unique position of university medical centers: in no other place is the interaction between fundamental research and the treatment of (complex) patients so clearly present, and the potential for impact on both patients and healthy people so great.

AI, e-health and medical technology as a theme within the Sectorplan
In the focus area "data-driven health: AI, e-health and medical technology," we are committed to the development and implementation of new technologies in medical practice. The sector plan allows Radboudumc, together with regional, national and international cooperation partners, to continue building a self-learning healthcare system where data about our patients and the outcome of treatments are used to improve the treatment of future patients and develop new prevention strategies.

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.

Read more about our strategy and what working at Radboud university medical center means. Our colleagues would be happy to tell you about it. #weareradboudumc


  • Research, development, innovation; Management
  • Health
  • max. 32 hours per week
  • €3230—€5088 per month
  • Higher professional education
  • 184883-P1224028-1


Radboud University Medical Center (Radboudumc)

Learn more about this employer


Geert Grooteplein-Zuid 10, 6525 GA, Nijmegen

View on Google Maps

Interesting for you