In a comprehensive contribution to the EJP RD’s Massive Open Online Course (MOOC) on “Innovative Therapies and Personalized Medicine for Rare Diseases“, led by CVBF, Dr. Bonka Georgieva provides crucial insights into data protection regulations that shape rare disease research.

Dr. Georgieva explores how the General Data Protection Regulation (GDPR) grants individuals specific rights over their personal data, particularly in healthcare settings. She emphasizes that the healthcare sector faces unique challenges due to the volume of sensitive information handled for patient care, institutional management, and scientific research.

She delves into the roles of key actors in data protection, including Data Protection Officers (DPOs), who serve as essential guardians of privacy within healthcare organizations.

“The protection offered by GDPR travels with the data,” Dr. Georgieva states, “ensuring consistent safeguards regardless of where the data is processed.” This principle becomes particularly relevant in rare disease research, where international collaboration is essential due to the geographic dispersion of patient populations.

The course material provides healthcare professionals and researchers with practical guidance on navigating data protection requirements while advancing rare disease research. By understanding these frameworks, organizations can better protect patient privacy while fostering the collaborative environment necessary for scientific progress.