The German National Registry of Primary Immunodeficiencies (2012-2017)

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

Theosophical Sites: Making Private Secrets Public

Theosophical Societies formed lodges in most of the larger towns in Germany in the years around 1900. Their houses were on the one hand open to the public, since theosophists tried to attract people by lectures or by inviting them to use their libraries; on the other hand, the societies needed closed rooms for their arcane rites, especially for Masonic ceremonies. This article supports two arguments: First, the sensualistic rites served as a form of compensation, especially significant for protestant Christians; second, the lodges protected >occult< activities that were not accepted in the mainstream culture of bourgeois citizens in Germany before the First World War.Theosophical Societies formed lodges in most of the larger towns in Germany in the years around 1900. Their houses were on the one hand open to the public, since theosophists tried to attract people by lectures or by inviting them to use their libraries; on the other hand, the societies needed closed rooms for their arcane rites, especially for Masonic ceremonies. This article supports two arguments: First, the sensualistic rites served as a form of compensation, especially significant for protestant Christians; second, the lodges protected >occult< activities that were not accepted in the mainstream culture of bourgeois citizens in Germany before the First World War