Alpha-1 Antitrypsin Deficiency Worldwide Research Network
Alpha-1 Antitrypsin Deficiency research is conducted at universities, hospitals, clinics and medical centers worldwide. This website is a searchable dataset containing comprehensive information on a worldwide network of researchers, titles of research projects in Alpha-1, locations of Alpha-1 focused research centers and testing centers with particular expertise in Alpha-1 Antitrypsin Deficiency genotyping. You will also find links to related research resources such as Patient Registries, Scientific and Lay Organizations, Publications and Funding Sources.
The data is searchable by name of investigator, title of research project, location of research or testing center, or through scientific keywords. NOTE: This dataset is complete through 2007. For current information, on Alpha-1 research see Last Month on PubMed.
What is Alpha-1?
Alpha-1 Antitrypsin is a rare, genetic condition discovered in 1963 in Sweden in association with emphysema. By 1969 an association with liver disease had been discovered in the US, and patients in both Europe and North America began to be identified with the condition. For a detailed description of the genetic and molecular characteristics, clinical and biochemical features, inheritance and mapping, and allelic variants of Alpha-1 Antitrypsin, see the Online Mendelian Inheritance of Man (OMIM) website. For information on diagnosis and clinical management please refer to the Alpha-1 Foundation and AlphaNet web resources at www.alphaone.org and www.alphanet.org.
The Alpha-1 Research Network began in the 1980s when an Alpha-1 Research Registry was formed by the National Institutes of Health (NIH) to refine the natural history of this condition in the United States, and to create a network of centers that would test and treat Alpha-1 Antitrypsin Deficiency. The Registry also was intended to gather together a cohort of individuals diagnosed with the condition who were willing to participate in research studies and clinical trials related to Alpha-1 Antitrypsin Deficiency. Individual country registries were also being formed in Europe beginning in 1972. By the 1990s the Alpha-1 Foundation in the US, and the Alpha-1 International Registry in Europe, had taken over the task of expanding the registries of Alpha-1 deficient individuals and creating research networks and infrastructures that would promote the involvement of this cohort of diagnosed individuals in research and clinical trials.
At present there are over 5,000 diagnosed individuals in the US and an approximate 5,000 identified in Europe and the Middle East. Testing centers in Central and South America, the Caribbean and Asia have also begun to identify additional individuals with Alpha-1 Antitrypsin Deficiency.