The third EJP Rare Diseases MOOC (Massive Open Online Course) on “Health Data Ethics & Regulatory Frameworks in Rare Disease Research” is now launched!
Developed through the joint efforts of the French Foundation for Rare Diseases, EURORDIS, ERN EpiCARE and the Gianni Benzi Foundation the MOOC is open to all interested.
The course is aimed at anyone interested in health data research and rare diseases, such as undergraduate and postgraduate students, healthcare professionals, researchers and enthusiasts who want to understand the ethics and regulatory framework in this field.
The video has been deactivated to protect your privacy. By clicking the ‘play’ button on the video screen, you consent to the storage of data (‘cookies’) by YouTube and to YouTube’s terms of service. Please see our privacy policy for more information.
By the end of the course, you’ll be able to:
- 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
From 6 May to 28 June, you can benefit from an enriched learning experience with expert trainers on hand to answer your questions.