In order to better define the clinical and laboratory characteristics of antiphospholipid syndrome in childhood an international Ped-APS Registry was established. The Ped-APS Registry represents the largest collection of pediatric patients with this syndrome reported to date and provides information on the clinical and immunologic features as well as insight into the long-term outcome of pediatric APS. In an international book chapter published in 2008, we reviewed our clinical experiences and highlighted new advances in the field of neonatal and pediatric APS.
D.01 Chairing over/coordinating (international and national) projects
COBISS.SI-ID: 24121561To assess frequency of primary immunodeficiencies (PID) in Slovenia, we established 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 which is the only tertiary care center for patients with PID in Slovenia. We identified 96 patients with clinical and laboratory features of severe PID diagnosed from 1977 to 2007. We believe that the SLO-PID Registry will enhance knowledge of these diseases in Slovenia and promote future research in this area of medicine.
D.01 Chairing over/coordinating (international and national) projects
COBISS.SI-ID: 24524505We organized an international meeting on periodic fever syndromes and other autoinflammatory diseases with the purpose to improve the knowledge on these inherited immune deficiencies in the region of Eastern and Central Europe. The meeting was organized in October 2009 in Ljubljana in collaboration with the Pediatric Rheumatology European Society and J Project initiative of the European Society for Primary Immunodeficiencies. The meeting was attended by 121 participants from 22 countries.
B.01 Organiser of a scientific meeting