Alpha One Foundation Registry
Alpha One Foundation.
2005
The purpose of the register is to:
In Scope:
- to establish a database of patients and their clinical details,
- to promote basic and clinical research into AATD and coordinate this activity
- to collect, assess and disseminate information concerning all aspects of AATD
- to encourage and support awareness of AATD.
Out of Scope:
- Mailing Lists.
Ireland - 32 counties– all Alpha-1 patients attending National Alpha-1 Outpatient Clinic in Beaumont Hospital.
Start Date – 2005.
No End Date.
The Alpha One Foundation was established in 2001 to promote research into Alpha-1, to improve diagnosis, treatment and to improve life expectancy and lifestyle of people with this condition. In 2004 the National Targeted Detection Programme for AATD, funded by the Department of Health, was launched by the Foundation in Beaumont Hospital, providing free testing to persons with chronic pulmonary conditions and also relatives of persons with AATD.
The national Alpha-1 registry was launched in 2005 to track the health of people with Alpha-1 Antitrypsin Deficiency across Ireland. Information in the registry helps clinicians and researchers see new trends, design clinical trials to test new therapies and improve the delivery of care for people with AATD.
Medical and Research Teams.
Height, weight, gender, phenotype/genotype, pulmonary function test results, liver function tests, hospitalisations, and complications related to lung and liver manifestations of AATD.
Not available.
No.
Place of residence, ethnicity, occupation, gender.
Data is collected weekly in the National Alpha-1 Outpatient Clinic in Beaumont Hospital from patients’ medical charts and information provided by patients themselves. Annual assessment of all enrolees takes place. The registry is part of a research study and is confidential. Written consent is gained from patients as part of ethical approval to collect and analyse data. Participation is voluntary.
Not in use.
50 records created on average annually.
Data is published in the Alpha One Foundation annual report.
Annual report and data requests.
No.