Research Registries

Updated: July 2, 2009

Research registries are lists of patients who have agreed to consider requests to take part in research on Alpha-1. Joining a registry does not mean that you agree to take part in research, only that you agree to receive requests from researchers who are studying Alpha-1.

Alpha-1 Canadian Registry

The Alpha-1 Canadian Registry was established in 1999 to gather information on alpha-1 in order to study the natural history of the disorder and to conduct studies and clinical trials. All information in the registry is strictly confidential. The registry is open to both patients and carriers. Consent to become part of the registry does not mean consent for clinical studies. Individuals are free to withdraw their names from the registry at any time, should they so choose.

Contact the registry at:
www.alpha1canadianregistry.com
ana.bradi@uhn.on.ca

Alpha-1 Canadian Registry
Toronto Hospital, Western Division, Edith Cavell Wing, # 4-011,
399 Bathurst Street, Toronto, Ontario, MT5 2S8

The toll free number is: 1-800-352-8186

Alpha-1 International Registry (AIR)

Canada is a member of the Alpha-1 International Registry (AIR) which is composed of about twenty countries who have national alpha-1 registries. The aim of AIR is to exchange information about alpha-1 among medical professionals and to coordinate and combine research into alpha-1. The organization has established an international database in Mälmo Sweden, the city where alpha-1 was first discovered.

For more information on AIR and participating countries, visit the website at www.aatregistry.org

Alpha-1 Foundation Research Registry (USA)

The Alpha-1 Foundation Research Registry is located at the Medical University of South Carolina (MUSC) and is open to Canadians who wish to register. Its purpose is to facilitate research into alpha-1 and, like the Canadian registry, all information on participants is completely secure and confidential. It is also open to both patients and carriers.

For more information, visit the website at www.alphaoneregistry.org or phone 1-877-886-2383.