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-1 Foundation Ireland have permission to 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 500 Alpha-1 individuals from 30 counties in Ireland included on the registry to date. Individuals of all ages who are diagnosed with Alpha-1 are encouraged to enroll 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:

Alpha-1 Foundation Ireland, Alpha-1 Suite, Beaumont Hospital, Dublin 9. Telephone: (01) 809 3871 or email: This email address is being protected from spambots. You need JavaScript enabled to view it..