The National Alpha-1 Antitrypsin Deficiency Registry

The national alpha-1 antitrypsin deficiency (Alpha-1) registry was established in 2007 to collect information on Alpha-1 individuals throughout Ireland. The registry is a confidential database that records medical and demographic information from individuals with various forms of Alpha-1. For example, the information in the database will include details of a person's genotype (the type of Alpha-1 that affects him/her), general health, as well as how Alpha-1 is affecting day to day living. This information is private, confidential and safely stored electronically on a secure password-protected database. Only staff of the Alpha One Foundation can access the database.

The registry will improve our understanding of Alpha-1 as a condition, facilitate clinical research, and help in the design of clinical trials that are investigating new treatments for Alpha-1. There are over 250 Alpha-1 individuals from 29 counties in Ireland included on the registry to date. Individuals of all ages who are diagnosed with Alpha-1 are encouraged to enrol in the Registry. The recruitment process is ongoing and we hope to include as many Alpha-1 individuals as possible.

In order to be included in the registry a person must give their written informed consent, but only after carefully reading an information leaflet describing the registry in plain English. A person can change their mind about taking part in the registry at any time and decide to opt out. If a decision is made to opt out, it will not affect the quality of treatment received in the future. 

For any further queries relating to the Alpha-1 Registry please contact:

Laura Fee, Clinical Research Associate, Alpha-1 Suite, Beaumont Hospital, Dublin 9. Telephone: (01) 809 3702. Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test. 
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha One Foundation provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. For more details ring 01-8093871 or email alpha1@rcsi.ie.