Privacy-Preserving Record Linkage – Use Cases, Approaches, and Implementation Scenarios in Rare Diseases

Linking sensitive health data across institutions is essential for advancing research in rare diseases, but it must be done without compromising patient privacy. In this HELIOS and HemaFAIR webinar, Dr. Dieter Hayn will introduce the principles and practical approaches of privacy-preserving record linkage (PPRL), enabling secure and compliant data integration across distributed sources.

Connection Link: https://teams.microsoft.com/meet/34228136676224?p=fXy9aMkdoBbVSK8ZEu

Privacy-preserving techniques allow researchers and clinicians to identify and connect records belonging to the same individual without exposing personally identifiable information. These methods are key to unlocking valuable insights while maintaining trust, legal compliance, and ethical standards in biomedical research.

This webinar will explore:

• The fundamentals of privacy-preserving record linkage and why it matters in rare disease research
• Key approaches, including cryptographic techniques, hashing, and secure multi-party computation
• Challenges in linking sensitive health data across institutions and jurisdictions
• Real-world implementation scenarios and use cases in rare disease and clinical research

This session aims to provide participants with a clear understanding of how to securely link health data across sources, supporting collaborative research while safeguarding patient privacy.

Target audience: researchers, clinicians, data scientists, data stewards, and stakeholders interested in secure data integration, privacy-preserving methods, and rare disease research.