The history of patient inclusion into the ESID registry over the last 20 years. (A, upper left panel) Cumulative number of patients registered in the ESID-R. The total number shown here is 31,889 patients (male n = 17,515; female n = 14,363; unknown n = 11), before exclusion of those discharged (n = 538), those with secondary immunodeficiency (n = 417), and those without a definitive diagnosis of IEI/PID (n = 306). Data are shown for the online registry only. Data from the very first version (hardcopy) were not transferred to the first online registry but newly entered. According to “The Source” (https://esid.org/wp-content/uploads/2024/03/ESID_TheSource_2003.pdf), the total number in 2003 was 9,707 patients. (B, upper right) Cumulative number of ESID-R participating centers. (C, lower left) Age at onset of IEI or PID. Age groups of age at disease onset, clinical diagnosis (CD) of IEI/PID, and of genetic diagnosis (GD) are shown. (D, lower right) Diagnostic delay (in years from first manifestation to clinical diagnosis and from clinical diagnosis to genetic diagnosis) of patients diagnosed over the last 20 years in the ESID-R. The x axis shows the year of clinical/genetic diagnosis in 2-year intervals. The blue boxes represent the delay between onset of symptoms and clinical diagnosis (blue) and between clinical and genetic diagnosis (orange); the y axis shows the delay in years: median with 95% confidence interval (notch size of boxes), interquartile range (boxes), and range (min-max, whiskers).