JMIR Publications

ABSTRACT

Background:

The German Network on Primary Immunodeficiency Diseases (PID-NET) utilizes the European Society for Immunodeficiencies (ESID) Registry as a platform for collecting data. In the context of PID-NET data we show how registries based on custom software can be made interoperable for better collaborative access to pre-collected data. OSSE (Open Source Registry System for Rare Diseases) provides patient organizations, physicians, scientists and other parties with open source software for the creation of patient registries. In addition, the necessary interoperability between different registries based on OSSE as well as existing registries is supported which allows those registries to be confederated at both the national and international levels.

Objective:

Data from the Primary Immunodeficiency Network (PID-NET) registry should be made available in an interoperable manner without losing data sovereignty by extending the existing custom software of the registry using the OSSE Registry Framework.

Methods:

This paper describes: (1) the installation and configuration of the OSSE Bridgehead; (2) an approach using a free toolchain to setup the required interfaces to connect any registry with the OSSE Bridgehead; (3) the decentral search which allows to formulate inquiries which are sent to a selected set of registries of interest.

Results:

PID-NET uses the established and highly customized ESID registry software. By setting up a so-called OSSE Bridgehead, PID-NET data is made interoperable according to a federated approach and centrally formulated inquiries for data can be received. As the first registry to use the bridgehead, the authors introduce an approach using a free toolchain to efficiently implement and maintain the required interfaces. Finally, to test and demonstrate the system two inquiries are realized using the graphical query builder. By establishing and interconnecting an OSSE Bridgehead with the underlying ESID registry, confederated queries for data can be received and, if desired, the inquirer can be contacted to further discuss any requirements for cooperation.

Conclusions:

OSSE offers an infrastructure which provides the possibility of more collaborative and transparent research. The decentral search functionality includes registries into one search application while still maintaining data sovereignty. The OSSE Bridgehead enables any registry software to be integrated into OSSE network. The proposed free toolchain to setup the required interfaces is easy to learn and potentially saves time and effort. The use of the decentral search is uncomplicated to use and offers a well structured, yet still improvable, graphical user interface to formulate queries.