What are Alpha-1 registers used for?

The registries collect data from patients with alpha-1 antitrypsin deficiency over the longest possible period. This data is used to answer questions from physicians, scientists, and epidemiologists. Many questions about the disease and its progression remain unanswered. The data in the registry should reflect the realities of care and its quality as closely as possible to real-world practice.

Study data can also be compared with registry data, and data analysis can provide starting points for new studies. Furthermore, participants (voluntarily enrolled patient groups) can be recruited for studies on new therapies.

Which alpha-1 registers are relevant for us?

Currently, two registries are available: the German Alpha-1 Registry and the international EARCO Registry. Another one, specifically for children and adolescents with alpha-1 antitrypsin deficiency, is currently being set up by Prof. Ganschow at the University Hospital Bonn.

Patients can enter their data into the German registry themselves, with support from their doctors. Entries into the EARCO registry are only made by doctors/specialists. Unfortunately, this is currently only possible in large centers. You can find out which centers are participating in the data collection on the EARCO website.

German Register for People Affected by AATM

Contact person:
Prof. Dr. med. Dr. rer. nat. Robert Bals
Saarland University Hospital,
Department of Internal Medicine V, Pulmonology, Allergology, Respiratory and Environmental Medicine, Building 41
Kirrberger Straße, 66421 Homburg/Saar
Email robert.bals@uks.eu

Go to the register

European Alpha-1 Research Collaboration (EARCO)

The European Alpha-1 Research Collaboration (EARCO) is an organization supported by the European Respiratory Society, whose focus is on research and teaching on Alpha-1 Antitrypsin Deficiency – both early detection and access to healthcare.

The core of the initiative is the registry. The collected data from Alpha-1 patients will help improve understanding of the disease and facilitate future research.

EARCO Register: Further information at: www.earco.org and www.earco.org/earco-registry

Go to the register

EARCO Information Flyer

EARCO Initiative

1 file(s) 1.33 MB

Download

Alpha-1-KIDS Registry

The Alpha-1-KIDS app, the registry for children and adolescents with Alpha-1 antitrypsin deficiency, serves, analogous to the registries for adults, primarily to derive helpful information about the disease.

Families themselves submit their registrations. Participation is possible via smartphone using the app (recommended) or via PC using this website.

Further information can be found at: https://alpha1bonn.de/

Go to the register