Slovene national registry of patients with primary immunodeficiency

  • Stefan Blazina Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
  • Gašper Markelj Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
  • Maruša Debeljak Department of Special Laboratory Diagnostics, University Children's Hospital Ljubljana
  • Anja Koren Jeverica Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
  • Nataša Toplak Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
  • Nevenka Bratanič Department of Endocrinology, Diabetes and Metabolic Diseases, University Children's Hospital Ljubljana
  • Marko Pokorn Department of Infectious Diseases Ljubljana
  • Peter Kopač University Clinic of Pulmonary Diseases and Allergic Diseases Golnik
  • Andreja Pikelj Pečnik Department of Infectious Diseases Ljubljana
  • Mitja Košnik University Clinic of Pulmonary Diseases and Allergic Diseases Golnik
  • Janez Jazbec Department of Haematology and Oncology, University Children's Hospital Ljubljana
  • Marijana Kuhar Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
  • Alojz Ihan Institute of Microbiology and Immunology, Faculty of Medicine, University of Ljubljana
  • Tadej Avčin Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
DOI: https://doi.org/10.6016/ZdravVestn.1321
Keywords: registry, primary immunodeficiency, awareness, diagnosis, treatment

Abstract

Data from Slovene national primary immunodeficiency (PID) registry are presented. Besides clinical and genetic data of patients with PID, quality indicators in patient care are included. Data are systematically collected in Department of Allergology, Rheumatology and Clinical Immunology in collaboration with physicians of different specialities. Increasing number and spectrum of PID are recognised in Slovenia. After establishment of Slovene multidisciplinary group in PID care in 2007 thorough immunological and genetic diagnostics, subcutaneous immunoglobulin replacement and treatment of PID with haematopoietic stem cell transplantation were introduced in routine clinical practice in Slovenia. Increased medium age of PID patients reflects improved survival and better recognition of PID in adults. According to the data in comparable registries percentages of patients with predominantly antibody deficiencies and complement deficiencies are low and high, respectively.

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Author Biographies

Stefan Blazina, Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana

Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana

Stefan Blazina, MD, PhD


Gašper Markelj, Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Maruša Debeljak, Department of Special Laboratory Diagnostics, University Children's Hospital Ljubljana
Department of Special Laboratory Diagnostics, University Children's Hospital Ljubljana
Anja Koren Jeverica, Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Nataša Toplak, Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Nevenka Bratanič, Department of Endocrinology, Diabetes and Metabolic Diseases, University Children's Hospital Ljubljana
Department of Endocrinology, Diabetes and Metabolic Diseases, University Children's Hospital Ljubljana
Marko Pokorn, Department of Infectious Diseases Ljubljana
Department of Infectious Diseases Ljubljana
Peter Kopač, University Clinic of Pulmonary Diseases and Allergic Diseases Golnik
University Clinic of Pulmonary Diseases and Allergic Diseases Golnik
Andreja Pikelj Pečnik, Department of Infectious Diseases Ljubljana
Department of Infectious Diseases Ljubljana
Mitja Košnik, University Clinic of Pulmonary Diseases and Allergic Diseases Golnik
University Clinic of Pulmonary Diseases and Allergic Diseases Golnik
Janez Jazbec, Department of Haematology and Oncology, University Children's Hospital Ljubljana
Department of Haematology and Oncology, University Children's Hospital Ljubljana
Marijana Kuhar, Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Alojz Ihan, Institute of Microbiology and Immunology, Faculty of Medicine, University of Ljubljana
Institute of Microbiology and Immunology, Faculty of Medicine, University of Ljubljana
Tadej Avčin, Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana
Department of Allergology, Rheumatology and Clinical immunology, University Children's Hospital Ljubljana

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Published
2016-01-14
How to Cite
1.
Blazina S, Markelj G, Debeljak M, Koren Jeverica A, Toplak N, Bratanič N, Pokorn M, Kopač P, Pikelj Pečnik A, Košnik M, Jazbec J, Kuhar M, Ihan A, Avčin T. Slovene national registry of patients with primary immunodeficiency. TEST ZdravVestn [Internet]. 14Jan.2016 [cited 28Apr.2024];84(12). Available from: http://vestnik-dev.szd.si/index.php/ZdravVest/article/view/1321
Issue
Vol 84 No 12 (2015): December
Section
Original article


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