Mainzelliste: Ten years of pseudonymization, record linkage, and informed consent management

TL;DR

Mainzelliste is an open-source software tool that helps researchers pseudonymize data, link records, and manage patient consent for biomedical studies.

Contribution

Mainzelliste introduces a comprehensive, flexible, and secure open-source solution for biomedical data integration and consent management.

Findings

Mainzelliste supports pseudonymization, record linkage, and consent management with a flexible REST API.

The software has been widely adopted in biobanks, registries, and research networks since 2015.

It includes features like secure multi-party computation and HL7 FHIR support for patient data.

Abstract

Record linkage and pseudonymization are crucial tasks in collaborative biomedical research. Data for a patient are rarely stored in one place and therefore often need to be linked and integrated across multiple institutions. Mainzelliste is an open-source software solution designed to solve these challenges by providing a comprehensive and flexible toolkit for pseudonymization, record linkage, and consent management. It supports a variety of pseudonyms, record linkage methods, and modular, informed patient consents. A highly flexible REST application programming interface (API) allows tight integration into existing applications and workflows. Since its initial release in 2015, Mainzelliste has evolved into a vibrant open-source software solution “by researchers, for researchers” including a user-friendly graphical interface, support for HL7 FHIR for consent and patient data, and record linkage based on secure multi-party computation, thereby supporting secure and efficient biomedical research.

•Software for pseudonymization, error-tolerant record linkage, and consent management•Flexible REST API for seamless integration with research software and workflows•100% open-source software with regular contributions from multiple institutions•Widely adopted in international registries, biobanks, projects, and research networks

Software for pseudonymization, error-tolerant record linkage, and consent management

Flexible REST API for seamless integration with research software and workflows

100% open-source software with regular contributions from multiple institutions

Widely adopted in international registries, biobanks, projects, and research networks

Mainzelliste is open-source software for pseudonymization, record linkage, and informed consent management. It is developed and widely used within the medical informatics community, biobanks, patient registries, and research networks. It can be used as a standalone application or integrated into existing environments and processes via a flexible REST API.

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