The National Alpha-1 Antitrypsin Deficiency Registry in Poland

Abstract

The alpha-1 antitrypsin deficiency (AATD) targeted screening program, together with the National Registry, were established in Poland in 2010 soon after the AATD diagnostics became available. Between 2010 and 2014 a total of 2525 samples were collected from respiratory patients countrywide; 55 patients with severe AAT deficiency or rare mutations were identified and registered, including 36 PiZZ subjects (65%). The majority of AATD patients were diagnosed with COPD (40%) or emphysema (7%), but also with bronchial asthma (16%) and bronchiectasis (13%). Therefore, the registry has proved instrumental in setting-up the AATD-dedicated network of respiratory medical centres in Poland. Since augmentation therapy is not reimbursed in our country, the smoking cessation guidance, optimal pharmacotherapy of respiratory symptoms as well the early detection, and effective treatment of exacerbations is absolutely essential.

Protocol for the EARCO Registry: a pan-European observational study in patients with α1-antitrypsin deficiency

“…Many different national registries on AATD exist throughout Europe [14,[17][18][19][20][21][22][23], but inclusion criteria, variables collected and level of quality control are different. The EARCO registry will harmonise the collection of prospective data, and its design will allow the new prospectively recorded data to be linked with the historical data collected in the different national registries.…”

“…EARCO takes advantage of existing AATD registries that have been developed at the national and international level. Several countries have established registries in which AATD patients are included and followed-up with clinical and biological data collected [14,[17][18][19][20][21][22][23]. However, these registries differ in terms of inclusion criteria, data collected and frequency and extent of follow-up.…”

Beyond the lungs: Alpha-1 antitrypsin’s potential role in human gestation

“…Since 2009, the National Institute of Tuberculosis and Lung Diseases in Warsaw, Poland has been providing a nationwide testing program, free of charge for all patients with respiratory disorders. 32…”

The role of alpha-1-antitrypsin protein in the pathogenesis of abdominal aortic aneurysm

“…It has been possible to perform full diagnostics of alpha-1-deficiency in Poland since 2010. Also, National Registry of Patients with AAT Deficiency is in operation [18].…”