[Patient care pathway and securing immunoglobulin supplies in primary immunodeficiency: results of a pilot study].

OBJECTIVES Securing the supply of immunoglobulins is essential in indications without therapeutic alternatives, such as Primary Immunodeficiencies (PIDs). The objective was to obtain an inventory of patients with PID, and to quantify their immunoglobulin needs. METHODS The retrospective study was conducted using data from January to June 2018, in Bordeaux, Lyon and Paris (Saint Louis). Patients with PID were included based on the pharmaceutical traceability of the 3 centres. The concordance between the patients included and the patients in the CEREDIH register was analysed. RESULTS For the 361 patients included (sex ratio: M/F 0.8; mean age: 45 ± 20 years, mean weight: 62 ± 19 kg), 2,082 dispensations were performed for a total volume of 57 kg of immunoglobulins. Of the 108 specialty changes identified, 68% were due to supply tensions. In total, the analysis of CEREDIH data made it possible to identify 727 patients with PID and followed up once in the study centres, 161 of whom were recorded in the 2 data follow-ups. CONCLUSIONS A complete overview of immunoglobulin needs in PIDs is difficult to obtain. Supply tensions have been observed although PIDs are a priority indication. Measures must be proposed to ensure an adequate supply regardless of the location of patients in the territory.