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National Alpha-1 Antitrypsin Deficiency Registry

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This page can be referred to using the following tiny url: http://tinyurl.com/b8cy3ss

Creator:

Alpha One Foundation

Subject Keywords: National Alpha-1 Patient Registry
Set: Chronic Conditions
Rare Disease
Rare Diseases
Conditions
Catalogue: Data
Primary Data Sources
Type: Database
Region: Republic of Ireland
Description:

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.

Date:

01/01/2007

Rights: © Alpha One Foundation
Suggested citation:

Alpha One Foundation. (2007) National Alpha-1 Antitrypsin Deficiency Registry [Online]. Available from: http://www.thehealthwell.info/node/15848 [Accessed: 24th March 2017].

  

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