Patient registry

The European Alpha-1 Research Collaboration (EARCO) is a pan-European network promoting clinical research and education in alpha-1 antitrypsin deficiency (AATD), a collaboration which will offer longitudinal real-world data for patients with AATD. EARCO has a global vision to increase the early diagnosis of AATD, better understand the natural history of the disease, and ensure optimal access to adequate care, emphasizing ambitions that serve the collective needs of the AATD research community. The goal is to grow to a network of more than 20 countries with 3,000 registered patients.

AlphaNet Canada’s Medical Director, Dr. Ken Chapman, is building a Canadian component into the EARCO patient registry to integrate data with preexisting international alpha-1 registries. We are confident that linking with other international alpha-1 patient registries will increase current knowledge regarding the disease. An interconnection of alpha-1 patient registries will allow researchers to easily access a broad set of alpha-1 patient registries from 20 countries just like they would access a single system. To learn more and enroll in EARCO, please visit https://inspirationresearch.ca.