Czech Registry of Monoclonal Gammopathies - Technical Solution, Data Collection and Visualisation

Area of Science:

• Hematology
• Medical Informatics

Background:

• Established in 2007 by the Czech Myeloma Group, the Registry of Monoclonal Gammopathies (RMG) collects clinical data on diagnosis, treatment, and survival.
• The registry focuses on monoclonal gammopathies including monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM), and primary AL amyloidosis.

Purpose of the Study:

• To describe the technology for data collection, storage, and online visualization within the RMG.
• To introduce the CLADE-IS platform as a new system for managing registry data and improving data entry accuracy.

Main Methods:

• The CLADE-IS platform was implemented for data collection and storage.
• System functions were designed to streamline data entry and minimize errors for all diagnoses.
• Online data visualization tools were developed for public and authenticated access.

Main Results:

• The RMG currently holds over 8,000 records from 19 Czech and 4 Slovak centers.
• The CLADE-IS platform facilitates efficient data management and error reduction.
• Publicly accessible online visualizations of patient data are now available.

Conclusions:

• The RMG provides a crucial data foundation for population-level disease monitoring.
• The implementation of CLADE-IS enhances the registry's capabilities for managing and visualizing monoclonal gammopathy data.