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MOOC course - EJP RD

May 6, 2024

Health data ethics & regulatory frameworks in rare disease research

The Foundation For Rare Diseases in collaboration with Gianni Benzi FoundationERN EpiCARE and Eurordis Rare Diseases Europe, has codeveloped a MOOC (Massive Open Online Course) entitled “Health data ethics & regulatory frameworks in rare disease research”. This course is part of the European Joint Programme for Rare Diseases (EJPRD).


The course is now open for registrations and can be accessed through this link


It 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.


The course will cover the following topics:

  • the different types of research data and data sources

  • the importance of health data for rare diseases research

  • the different actors involved in the data processing activities

  • the main challenges related to the use of health data in research and how they could be overcome

  • the role of data sharing and its benefits

  • the ethics, regulatory and data protection framework governing health data processing

  • the main existing resources for the use of health data

  • the different perspectives of the main subjects involved in the data processing activities for research purposes


The course educators will be available online from May 6th to June 28th to answer participants' questions and encourage discussions.


The course content will be accessible for free for 4 weeks after registration, which is the same duration as the course. After this period, users can choose to pay for an upgrade to continue accessing the content, according to the plans offered by the platform.

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