Author/Editor		Blazina, Štefan; Markelj, Gašper; Debeljak, Maruša; Koren, Anja; Toplak, Nataša; Bratanič, Nevenka; Pokorn, Marko; Kopač, Peter; Pikelj Pečnik, Andreja; Košnik, Mitja; Jazbec, Janez; Kuhar, Marijana; Ihan, Alojz; Avčin, Tadej
Title		Slovenski nacionalni register bolnikov s primarno imunsko pomanjkljivostjo
Translated title		Slovene national registry of patients with primary immunodeficiency
Type		članek
Vol. and No.		Letnik 84, št. 12
Publication year		2015
Volume		str. 797-808
ISSN		1581-0224 - Zdravniški vestnik
Language		slv
Abstract		Background: Data from the Slovene National Primary Immunodeficiency (PID) Registry are presented. Besides clinical and genetic data of patients with PID, quality indicators in patient care are included. Methods: Data are systematically collected in the Department of Allergology, Rheumatology and Clinical Immunology in collaboration with physicians of different specialities. Results: An increasing number and spectrum of PID are recognised in Slovenia. After the es - tablishment of a Slovene multidisciplinary group for PID care in 2007, thorough immunological and genetic diagnostics, subcutaneous immuno - globulin replacement and treatment of PID by haematopoietic stem cell transplantation were introduced in routine clinical practice in Slove - nia. Increased medium age of PID patients re - flects improved survival and better recognition of PID in adults. Conclusions: According to the data in compa - rable registries, percentages of patients with pre - dominantly antibody deficiencies and comple - ment deficiencies are low and high, respectively.
Keywords		register primarna imunska pomanjkljivost ozaveščenost registry primary immunodeficiency awareness