Avtor/Urednik		Koren-Jeverica, A; Markelj, G; Avčin, T
Naslov		National Slovenian registry of primary immunodeficiencies
Prevedeni naslov		Nacionalni slovenski register primarnih imunskih pomanjkljivosti
Tip		članek
Vir		Slov Pediatr
Vol. in št.		Letnik 15, št. 1
Leto izdaje		2008
Obseg		str. 93-6
Jezik		eng
Abstrakt		To assess the frequency of primary immunodeficiencies (PID) in Slovenia, we decided to establish the Slovenian Registry of Patients with PID (SLO-PID Registry). At present, the SLO-PID Registry includes patients diagnosed and treated at the University Children's Hospital in Ljubljana. Patient's Data were obtained from medical records in different departments of our hospital. 96 patients with clinical and laboratory features of severe PID diagnosed between 1977 and 2007 were identified. The average age at diagnosis was 4.4 years. Eighteen percent of the patients included in the SLO-PID Registry have died, with the average age at death being 8.6 years. Patients with PIDs need a multidisciplinary care. One of the main aims of the SLO-PID Registry is to improve collaboration between different subspecialists involved in the management of patients with PIDs. Our aim is to enhance knowledge of these diseases and promote future research in this area of medicine.
Deskriptorji		IMMUNOLOGIC DEFICIENCY SYNDROMES REGISTRIES SLOVENIA