AATD is a hereditary disease that is still greatly underdiagnosed.  As with many other rare diseases, the body of data on AATD is inadequate owing to the small number of patients worldwide. Registries containing a collection of information on the course of the disease and data on untreated and treated patients are therefore indispensible.

 

The German Alpha-1 Antitrypsin Deficiency Registry  is a central database that does valuable work in this respect:

• Overview of the number of persons with AATD in Germany
• Overview of the care situation
• Overview of the forms of AATD
• Investigation of long-term progression of the disorder
• Quality-assurance measures
• Affiliation with the Alpha-1 International Registry (AIR)

 

Patients give their consent to participate in the registry by completing and sending in a questionnaire (available from the registry or from the internet at www.alpha-1-register.de).

 

Please talk to your physician about joining the registry. Every piece of information counts. Further information can be obtained at www.alpha-1-register.de.

 

Contact: Prof. Robert Bals, MD Saarland University Hospital Unit V for Internal Medicine - Pulmonology, Allergology, Respiratory and Environmental Medicine Building 91 Kirrberger Strasse 66421 Homburg/Saar   Tel. +49(0) 68 41 / 1 62 36 01 Fax +49(0) 68 41 / 1 62 36 02 Email robert.bals@uks.eu