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Eurordis - Rare Disease Europe


Registries: how can you work with existing registries or set up a registry?

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There are many challenges that can arise when developing registries. However, these are reducing over time due to the advances in both technology and expertise. With this in mind, we have created this e-learning course with patient organisations and patient advocates. This course is developed in collaboration with key experts with extensive experience developing registries.

We would love to hear your feedback once you’ve completed the course. Go back to this page and submit your feedback using the ‘Feedback’  button that you’ll find below the progress bar. Your opinion is very valuable and will help us improve how we deliver our courses.