A First Look at the Italian Registry on Pulmonary Non-Tuberculous Mycobacteria (NTM) -IRENE

Data on characteristics of patients with pulmonary NTM in Italy are lacking. The Italian Registry on pulmonary NTM (IRENE) has been set up in April 2017 as a multicenter, prospective, observational, cohort study enrolling consecutive adults with active NTM pulmonary infection or NTM pulmonary disease (NTM-PD) from 48 centers across Italy. Data are collected at baseline with yearly follow-up visits. 500 patients have been enrolled in the registry so far. Median (IQR) age is 67 (55-75) years, 66% are females, median (IQR) BMI is 20 (18-22), and 45% are current/former smokers. 90% have pre-existing lung diseases, including bronchiectasis (66%), COPD (21%), cystic fibrosis (10%) and asthma (8%), 36% have GERD, and 25% at least one risk factor for immunosuppression. 355 (71%) patients met the 2007 ATS/IDSA criteria for NTM-PD. Among them, the most common NTM are M. avium complex (72%) -including M. intracellulare (28%) and M. avium (27%)-, M. abscessus complex (MABc) (13%) -including M. a.abscessus (10%)-, M. xenopi (4%) and M. kansasii (3%). 77% of the patients have cough, 55% sputum production, 51% fatigue, 47% shortness of breath, 37% weight loss, 27% intermittent fever, 26% haemoptysis, and 22% night sweats. In terms of radiology, 21% of the patients have cavitating nodules, 13% large cavities and 58% consolidations. Median (IQR) FEV1%pred. is 77% (59-94). A total of 77% of patients with NTM-PD underwent treatment, including azithromycin/clarithromycin, ethambutol, rifampicin/rifabutin. IRENE has the important role to inform the clinical and scientific communities on the current management of adults with pulmonary NTM in Italy and acts as a national network to increase disease awareness.