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Dies ist der 20. Artikel unseres Blogfokus „Salafismus in Deutschland“. Bislang haben sich über 700 junge Menschen aus Deutschland den gewaltbereiten Salafisten des IS angeschlossen. Sie haben die Bundesrepublik verlassen und sind in den Jihad gezogen. Die mediale Diskussion beschränkt sich bei der Diskussion darüber, wie dies zu verhindern sei, zumeist auf sicherheitspolitische Maßnahmen. Das sind Maßnahmen, die auf Bundes- oder Länderebene durchgeführt werden. In der Prävention von Radikalisierung spielen allerdings die Kommunen eine entscheidende Rolle. Dieser Beitrag beleuchtet die Maßnahmen, die auf kommunaler Ebene getroffen werden (sollten) – von verschiedenen Präventionsangeboten bis hin zu Chancen kommunaler Vernetzung...
Introduction: The German PID-NET registry was founded in 2009, serving as the first national registry of patients with primary immunodeficiencies (PID) in Germany. It is part of the European Society for Immunodeficiencies (ESID) registry. The primary purpose of the registry is to gather data on the epidemiology, diagnostic delay, diagnosis, and treatment of PIDs.
Methods: Clinical and laboratory data was collected from 2,453 patients from 36 German PID centres in an online registry. Data was analysed with the software Stata® and Excel.
Results: The minimum prevalence of PID in Germany is 2.72 per 100,000 inhabitants. Among patients aged 1–25, there was a clear predominance of males. The median age of living patients ranged between 7 and 40 years, depending on the respective PID. Predominantly antibody disorders were the most prevalent group with 57% of all 2,453 PID patients (including 728 CVID patients). A gene defect was identified in 36% of patients. Familial cases were observed in 21% of patients. The age of onset for presenting symptoms ranged from birth to late adulthood (range 0–88 years). Presenting symptoms comprised infections (74%) and immune dysregulation (22%). Ninety-three patients were diagnosed without prior clinical symptoms. Regarding the general and clinical diagnostic delay, no PID had undergone a slight decrease within the last decade. However, both, SCID and hyper IgE- syndrome showed a substantial improvement in shortening the time between onset of symptoms and genetic diagnosis. Regarding treatment, 49% of all patients received immunoglobulin G (IgG) substitution (70%—subcutaneous; 29%—intravenous; 1%—unknown). Three-hundred patients underwent at least one hematopoietic stem cell transplantation (HSCT). Five patients had gene therapy.
Conclusion: The German PID-NET registry is a precious tool for physicians, researchers, the pharmaceutical industry, politicians, and ultimately the patients, for whom the outcomes will eventually lead to a more timely diagnosis and better treatment.