Alpha One Foundation Registry

Data Collection Type
National data collections of health and social care in Ireland
Organisation

Alpha One Foundation

Year established

2005

Statement of purpose

The purpose of the register is to:

  • to establish a database of patients and their clinical details
  • to promote basic and clinical research into Alpha-1 Antitrypsin Deficiency (AATD) and coordinate this activity
  • to collect, assess and disseminate information concerning all aspects of AATD
  • to encourage and support awareness of AATD.
     
Coverage

National — all Alpha-1 patients attending National Alpha-1 Clinic in Beaumont Hospital.

Description

The Alpha One Foundation was established in 2001 to promote research into AATD, to improve diagnosis, treatment and to improve life expectancy and lifestyle of people with this AATD. 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 One Foundation Registry was launched in 2005 to track the health of people with AATD 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.

Data content

Height, weight, gender, phenotype/genotype, pulmonary function test results, liver function tests, hospitalisations, and complications related to lung and liver manifestations of AATD.

Data providers

The National Alpha-1 Clinic in Beaumont Hospital.

Data collection methodology

Data is collected in the National Alpha-1 Clinic 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.

Data dictionary

Not available.

Clinical coding scheme

Not in use

Size of national collection

Approximately 34 records created on average annually.

Publication frequency

Data is published in the Alpha One Foundation annual report.

Accessing data

Annual report and data requests.

Open data portal access

No.

Email contact
Telephone contact