eLearnAfrica
Health Data Ethics & Regulatory Frameworks in Rare Disease Research
Foundation for Rare Diseases
  • Start Date: 06 May, 2024
  • 4 weeks
  • Study Content: Videos


Discover the role of health data in rare disease research, exploring the ethics and regulatory frameworks governing data use.

Course Fee: Free
Certificate Cost: See Fees and Eligibility
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Course Description

This course is made available through the eLearnAfrica and FutureLearn partnership.

Empower ethical health data practices 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 Foundations for Rare Disease Research, 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 Foundations for Rare Disease Research’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.


Certificate cost may vary. You will be redirected to the host page for cost and payment options.

Foundation for Rare Diseases

This university is part of the partnership between eLearnAfrica and FutureLearn.

This institution is available on eLearnAfrica through partnership with FutureLearn.

You may be able to download course materials after enrolling in this course. If not, all of the necessary course materials provided by the course instructor will be available on the provider's course page.
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Effective Date: September 22, 2016