Pediatric Competence Center for Primary and Acquired Immunodeficiencies provides specialized services for children with primary (congenital) and secondary (acquired, i.e. developed after another illness) immunodeficiencies. Primary immunodeficiency (PID) is a congenital or hereditary disorder of the immune system and is considered a rare disease as the various forms of immunodeficiencies affect less than 1 in 2000 people. However, immunodeficiences currently affect approximately 6 000 000 people worldwide and over 638 000 people in Europe.
Secondary immunodeficiencies are caused by immunosuppresive treatments after transplantation, autoimmune diseases, chemotherapy and biologic therapy. Such treatments frequently affect the immune system and cause secondary immunodeficiencies. Sometimes secondary immunodeficiency requires treatment by immunoglobulin replacement therapy.
Pediatric Competence Center for Primary and Acquired Immunodeficiencies was established under Coordinating Center of Children Rare Diseases in 2014. It has improved the care of patients with immunodeficiencies as well as the level of cooperation between various healthcare specialists. A wide variety of outpatient and inpatient care is provided in the competence center: allergologists and clinical immunologists, pediatric oncohematologists, geneticists, pediatric gastroenterologists, pediatric infectologists to be named a few along with other specialists consultations. Modern molecular genetic PID diagnostics, immunoglobulin replacement therapy, hematopoietic stem cell transplantation, provision of treatment and follow-up recommendations for the patient and his family is available in our competence center. In addition to this, patients may also receive psychological and social support.
There are over 60 children with primary and secondary immunodeficiencies followed-up in the Pediatric Competence Center for Primary and Acquired Immunodeficiencies. Most PID diagnoses have been confirmed by genetic testing. Over 10 children were treated by immunoglobulin replacement therapy and 16 patients have received allogeneic hematopoietic stem cell transplantation. Clinical, biochemical, microbiological, immunological and genetic testing, modern and radiological diagnostic methods are used in our competence center. Patients are registered in the center’s monitoring system and European Society for Blood & Marrow Transplantation (EBMT) Registry. The competence center cooperates with leading immunodeficiencies diagnostics and treatment specialists such as the Karolinska institute (Sweden) and National Institute of Health, NIH, USA. Since 2019, the competence center has also been a member of the European Reference Network for Rare Immunodeficiency, Autoimmune and Autoinflammatory Diseases, ERN RITA.
More information about the reference network on ERN RITA website. This network connects healthcare institutions that are best prepared to provide healthcare services for children with immunodeficiencies, autoimmune and autoinflammatory diseases.