Certificate of Achievement
has completed the following course:
Health Data Ethics & Regulatory Frameworks in Rare Disease Research
Foundation for Rare Diseases and European Joint Programme on Rare Diseases
This course highlights the importance of health data in research, focusing on rare diseases. The different actors involved in the data processing activities will be illustrated, as well as the challenges met at the different steps of the data life cycle and the ethical and regulatory frameworks for using health data. Experts from various fields will share their experiences, allowing participants to apply theoretical concepts to real-life situations.
4 weeks, 3 hours per week
Magda Granata
European Joint Programme on Rare Diseases - WP16 Online Academic Course Coordinator
Foundation for Rare Diseases
Transcript
Learning outcomes
- 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
Syllabus
- The importance of data use and re-use in rare disease research
- The challenges related to the use of health data in research
- The different types of research data and data sources
- The definition and purposes of the FAIR principles for the use of data
- The ethics, regulatory and data protection framework governing data use
- The available resources for conducting research with health data
- The viewpoints of the key parties participating in the processing of data for research purposes
In association with
Issued on 23rd September 2026
The person named on this certificate has completed the activities in the transcript above. For more information about Certificates of Achievement and the effort required to become eligible, visit futurelearn.com/proof-of-learning/certificate-of-achievement.
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