How and with What the National Registry of Primary Immunodeficiencies Benefits Specialists and Patients
Primary immunodeficiencies constitute a very heterogeneous group of congenital diseases. They affect both specific and nonspecific immunity and are classified accordingly. The care for patients with antibody production disorders and hereditary angioedema (HAE) is economically the most demanding and relatively specific. Can a specialized registry help improve this care?
For individuals with immune system dysfunction, timely and accurate diagnosis, followed by adequate systematic and specialized care, is crucial. HAE attacks are unpredictable, making treatment scheduling very challenging, necessitating more frequent monitoring of these patients. Patients with antibody production disorders are suitable for immunoglobulin replacement therapy. Unfortunately, centralizing therapy for these patients hasn't yet been successful, so they are treated in specialized centers across the country as well as in allergology and immunology clinics.
Tasks and Possibilities of the Registry
The National Registry of Primary Immunodeficiencies (PID) is a project initiated by the Czech Society of Allergology and Clinical Immunology ČLS JEP (ČSAKI), established in 2011 to collect epidemiological data on patients with congenital immune disorders. Currently, it involves 20 healthcare facilities across the Czech Republic, with over 1200 patients. The registry now serves to monitor PID patients in terms of their numbers, types of diagnosis, and treatment. The data provides an overview of the epidemiological situation within the country, comparison between regions, monitoring of diagnostics, treatment, and overall care, as well as the development and effectiveness of this therapy over time, including cost-efficiency. Outputs from the registry are also used for scientific purposes, regularly presented at conferences and published in national and international journals.
Technical Provision
The technical provision of the registry is carried out in collaboration with the Institute of Biostatistics and Analyses, Ltd. (IBA), which has been a spin-off company of Masaryk University in Brno since 2014. IBA provides comprehensive services from organizational, statistical, regulatory, and legislative perspectives. For data collection, IBA uses its collection system CLADE-IS, a modern tool that guarantees the security, integrity, and quality of the gathered data.
Prof. MUDr. Jiří Litzman, CSc.
MUDr. Roman Hakl, Ph.D.
MUDr. Zita Chovancová, Ph.D.
Institute of Clinical Immunology and Allergology, St. Anne's University Hospital in Brno and Faculty of Medicine, Masaryk University
Mgr. Martina Nováčková
Institute of Biostatistics and Analyses, Ltd., Brno
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