OSSE

OSSE provides a registry framework to create, standardize, and federate patient registries for rare diseases, enabling interoperable data sharing and privacy-preserving federated search.

Key Features:

• Interoperability and Federation: Supports interoperability from inception and federation of registries at national and international levels to enable integrated searches and data comparison.
• Metadata Repository (MDR): Implements a Metadata Repository based on the ISO/IEC 11179 standard to specify and share standardized data elements across registries.
• Data Protection and Integrity: Enforces data protection constraints so that actual data are not transmitted without owner consent and enables privacy-preserving federated search.
• Bridgehead Functionality: Provides a bridgehead translator to map and exchange data between OSSE and non-OSSE registries.
• Pseudonymization Service (Mainzelliste): Integrates the Mainzelliste pseudonymization service to pseudonymize patient identifiers.

Scientific Applications:

• Linked Patient Registries: Operates linked patient registries for rare diseases to aggregate comparable data across multiple sources.
• Federated Data Discovery for Clinical Studies: Enables federated searches to identify relevant patient data for clinical studies while preserving privacy and data ownership.

Methodology:

Specifies data collection via an ISO/IEC 11179-conformant Metadata Repository, implements federated search that leaves data on local premises unless owner consent is given, integrates bridgehead translation to connect non-OSSE registries, and employs the Mainzelliste pseudonymization service.