EARCO: European Alpha -1- Research Collaboration

About EARCO

EARCO stands for European Alpha-1 Research Collaboration. It is a pan-European network committed to promoting clinical research and education in alpha-1 antitrypsin deficiency (AATD). The core project is the pan-European AATD Registry, a collaboration which will offer longitudinal real-world data for patients with AATD.

EARCO has a global vision to increase the early diagnosis of alpha-1 antitrypsin deficiency (AATD), understand better the natural history of the disease and ensure optimal access to effective care, placing emphasis on ambitions that serve collective needs of the AATD research community and bringing people with AAT deficiency to the centre of the research environment in a real-world context.

Specific aims

• To build a network of researchers and clinical experts in AATD to guide future clinical and research priorities in Europe.
• To establish a consensus among patients and physicians on the main clinical and translational research priorities in the field of AATD.
• To create the EARCO registry with a quality control system and with a self-learning system, a European AATD registry to facilitate patient recruitment for research and quality improvement initiatives across healthcare systems.
• To facilitate applications to industry and European Union funding sources to support the EARCO registry
• To support and encourage early career researchers in the field of AATD through involvement in network activities (including short-term placements).
• To increase the number and quality of clinical trials performed in AATD across Europe.

Registry

The overall goal is to grow to a network of more than 20 countries with 3,000 patients over 3 years.

The aim of the pan-European AATD Registry is to collect prospective, standardised, longitudinal real-world data on a pan-European level in more than 20 countries necessary to understand:

• The natural history of the disease
• The influence of risk factors
• The role of augmentation therapy in the prognosis of the disease elements

Stakeholders

The EARCO Steering Committee is composed of the CRC chairs, clinician researchers, experts in translational research and patient representatives from the Alpha-1 Global network

The Stakeholder Board is composed of a partnership between the different stakeholder groups e.g Steering Committee, National Registry leads, funding partners, scientific experts, and patient advisors.

Bringing together the expertise of all these groups is certain to provide the means to achieve the goals of EARCO.

Contact

If you are interested in more information about EARCO or would like to join the registry, please contact scientific@ersnet.org.