Health Data Ethics & Regulatory Frameworks in Rare Disease Research

Delve into ethical and regulatory framework of health data use in rare diseases.

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.

Interested in learning more? Expand your skillset further by taking EJP-RD’s From Lab to Clinic: Translational Research for Rare Diseases.

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.

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.

• describe the different types of research data and identify data sources
• explain the importance of health data for rare diseases research
• identify the different actors involved in the data processing activities
• identify the main challenges related to the use of health data in research and how they could be overcome
• discuss the role of data sharing and its benefits
• explore the ethics, regulatory and data protection framework governing health data processing
• identify the main existing resources for the use of health data
• present the different perspectives of the main subjects involved in the data processing activities for research purposes