Ensuring the highest data protection standards is a cornerstone of our transfusion registry platform. We are committed to adhering to strict security protocols to protect sensitive information and maintain data integrity. Our data protection strategy includes the following key elements:
Compliance with EU haemovigilance and GDPR protocols
The LOS Transfusion Registry strictly adheres to the General Data Protection Regulation (GDPR) and the European Union’s haemovigilance standards. This compliance guarantees that all data processing activities meet strict legal requirements and ensures that personal and medical information is handled with the utmost care. We use advanced technical and organisational measures to protect data, including encryption, access controls and continuous monitoring.
Highest standards for data integrity and confidentiality
We attach great importance to the integrity and confidentiality of the data collected. Our system is designed to prevent unauthorised access and ensure the accuracy and reliability of the data. Personal and medical data are stored separately, using pseudonymisation techniques to protect privacy. Regular audits and validations are carried out to ensure data quality and compliance with best practice.
Use of the OSSE platform for advanced data management
Our registry utilises the Open Source Register System for Rare Diseases (OSSE), a flexible and secure software solution for setting up and operating patient registries. OSSE ensures that data collection is standardised using a systematised medical nomenclature such as SNOMED CT, which facilitates interoperability and future data migration. It supports the FAIR principles (Findable, Accessible, Interoperable, and Re-usable) and ensures compliance with GDPR and other relevant regulations. The platform also has a web-based user interface for data entry and pseudonymisation, which increases both user-friendliness and security (OSSE Register).
The set-up and management of the OSSE software is provided by Verika GmbH, a medical information technology specialist based in Göttingen, Germany.
The data is stored on the server of the Johann-Wolfgang Goethe University Frankfurt under highest data security and protection standards.
By integrating these robust data protection measures and utilising the advanced features of the OSSE platform, we provide a secure and trusted environment for long-term data collection in transfusion medicine. Our commitment to data security not only facilitates groundbreaking research, but also ensures the security and privacy of all stakeholders.
