The registry and beyond
Although the registry is the core project of EARCO, a number of additional projects are already active that will be finalized during the first three years of EARCO.
Developing reliable standards for laboratory diagnosis of AATD is crucial. Although different (national) algorithms that are used for the diagnosis of AATD can provide an accurate diagnosis, it
is important to establish an external quality control
programme that can also be used for new laboratories, in order to ensure reliable test results.
With the Network of patients’ representatives, researchers and clinical investigators, it is important to identify informed research needs, to establish an agenda for AATD research, and to
attract young investigators to the area of clinical
management and research of AATD for the future. Two surveys are being conducted, one for patients and the second for healthcare Providers in order to understand the key research needs in the field of AATD in Europe.
The decision as to when to initiate augmentation therapy is sometimes straightforward, but often complex. An ongoing international survey will provide
insights into the current practice of augmentation therapy in those European countries where it is available.