The Alpha One International Registry (AIR)
The Alpha One International Registry (AIR) is a multinational research organization, representing a combined research effort of nearly 20 countries. It was formed in response to a recommendation of the World Health Organization at a meeting on alpha1-antitrypsin (AAT) deficiency in March 1996.
Representatives from the member countries meet at least twice per year during a council meeting to discuss AAT research and the progress of AIR. A Coordinating Committee is responsible for the management of the group.
Each member country has a National Registry of patients with AAT deficiency, and contributes detailed clinical information about individuals with AAT deficiency within the country to an international database in Mälmo, Sweden. The information sent to Sweden is identified only by a number, and no information is sent that can be traced to individual people.
This international cooperative effort can be expected to stimulate medical research through resources that are only available through multinational cooperation. The AIR members are actively studying ways to improve detection of the disease, ways to follow the course of the lung disease, and ways to improve treatment of the disease.
AIR wants to facilitate clinical trials with innovative compounds being developed by pharmaceutical industry for diseases associated with alpha1-antitrypsin deficiency, such as emphysema, COPD and liver cirrhosis. The pharmaceutical community can contact the Coordinating Committee of AIR by e-mail at this contact.