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Alpha-1 prevalence in Ireland among the highest in world populations, reports Alpha-1 Foundation of Ireland
DUBLIN – The prevalence of Alpha-1 Antitrypsin Deficiency in Ireland is among the highest in the world, according to research reported by the Alpha-1 Foundation of Ireland.
Recent research has found that there are 3,000 people with Alpha-1 (ZZ) in Ireland and over 250,000 MZ carriers – but less than 5 percent of these have been identified. The Irish Foundation notes that of the first eight lung transplants in the Irish national lung transplant program, four were Alpha-1 patients.
The under-diagnosis continues, even though Alpha-1 can be diagnosed by a simple blood test. Doctors in Ireland can send a blood sample to the laboratory in RCSI Beaumont Hospital in Dublin, where the Alpha-1 Foundation of Ireland is based.
Doctors and hospitals in Ireland are offered a full testing service free of charge.
In addition, thanks to the US Alpha-1 Foundation, the Foundation of Ireland can also provide finger-prick test kits, more convenient and less invasive than intravenous blood draws. The finger-prick testing is especially suited to screening family members of those with Alpha-1. The finger-prick test can be done at home, the sample stored at room temperature and sent free by regular mail.
Ireland’s targeted detection program has screened over 4,000 patients and identified 64 ZZ patients, 64 SZ patients, and over 600 MZ carriers. The number of deficient patients found (the ZZ and SZ groups) amounts to 3.2 percent of the total group tested, a very high percentage.
Once identified, new Alpha-1 patients are offered a referral to the dedicated Alpha-1 clinic with Professor Noel G. McElvaney, MD. In addition, Alpha-1 patients can enroll in the Ireland AAT replacement therapy clinical trial for ZZ individuals, and to participate in the MZ family study, which hopes to clarify the risk of COPD in MZ individuals.
The Alpha One Foundation of Ireland was established in 2001 to promote research into and awareness of Alpha-1 Antitrypsin Deficiency, to improve diagnosis and treatment and to improve the life expectancy and quality of life in people with Alpha-1.
The Foundation has also set up a national registry of Alpha-1 patients and hosts an annual Alpha-1 National Patient Congress in Dublin, with speakers who provide clinical and patient perspectives and experiences. The Foundation hopes to achieve earlier identification of Alpha-1 patients in Ireland.
The Irish government’s Department of Health and Children has funded the national targeted detection program since it began in 2004. This is still the only national screening program for Alpha-1 in the world. The primary objective of the program is to screen for Alpha-1 according to World Health Organization guidelines.
The Irish Alpha-1 Foundation has a website designed to be a vital tool for patients and health professionals alike.
