Health Data Ethics & Regulatory Frameworks in Rare Disease Research

Research can illuminate our understanding, treatment, and support for those affected by rare diseases. But how can we ensure rare disease research is conducted with integrity?

On this online course from the European Joint Programme on Rare Diseases, you’ll gain essential insights to confidently manoeuvre through the complex realm of rare disease research and feel confident to ethically and effectively apply these theoretical concepts in practice.

Discover more about the rare disease landscape by understanding data and data management tools

In the first week of this course, you’ll lay the foundations, defining rare diseases and data types and their respective challenges.

You’ll learn about data sources and how to utilise patient registries for data collection. By the end of week two, you’ll be able to confidently explain FAIR principles and the data life cycle.

Understand the importance of data protection and ethical data handling

Recognize the diverse actors and frameworks involved in data processing activities, ensuring adherence to ethical and regulatory standards.

Apply what you’ve learned from researcher and patient perspectives and effectively implement ethical data handling practices in real-world scenarios.

Feel supported by experts from data scientists to clinicians

Developed under the European Joint Programme on Rare Diseases, this expert-guided course will allow you to meet clinicians, researchers, patient advocacy groups, as well as individuals working on European infrastructure and regulation.

This course is designed for anyone interested in health data research and rare diseases, such as undergraduates, PhD students, healthcare professionals, researchers, and enthusiasts keen on understanding ethics and regulatory frameworks in this field.