
1. Mayer AS, Stoller JK, Bucher Bartelson B, Ruttenber J, Sanhaus
RA, Newman LS. Occupational exposure risks in individuals with PI*Z
alpha(1)-antitrypsin deficiency. Am J Respir Crit Care Med 2000,
162:553-8.
An important study that was derived from Registry participants
was published this spring in the American Review of Respiratory
and Critical Care Medicine. This study examined whether occupational
exposures to mineral dust, fumes, or smoke contribute to cough or
low lung function in Alpha-1. The findings are strong evidence that
a clean air environment is important to lung health for individuals
with Alpha-1. For full abstract at the National Library of Medicine.
2. Stoller JK, Brantley M, Fleming LE, Bean JA, Walsh J. Formation
and current results of a patient-organized registry for alpha(1)-antitrypsin
deficiency. Chest 2000; 118(3):843-8.
This description is interesting reading for Registry participants
since it shows how diverse a population the Alpha-1 community is
and compares the current registry to the National Institute of Health
Registry that ended in 1996. For full abstract at the National Library
of Medicine.
3. Mullins CD, Huang X, Merchant S, Stoller JK. The Direct Medical
Costs of Alpha-1 Antitrypsin Deficiency. Chest 2001; 119(3): 745-752
The findings suggest that Alpha-1 is an expensive disease for those
with severely depressed lung function and that the major cost of
illness is the cost of hospitalization.
4. Baker RD, Rosenthal P, Sherman P. Alpha-1 Foundation Research
Registry: From the past to the Future. Journal of Pediatric Gastroenterology
and Nutrition 2002; 34:1-4
5. Strange, C.,Dickson, MR; Carter, CL Carpenter, MJ.; Holladay,
B.; Lundquist, R.; Brantly, ML (2004) Genetic testing for Alpha1-antitrypsin
deficiency. Genet Med. 6(4): 204-211
Results of the Alpha Coded Testing Study.
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