What is the Canadian Registry?Canada is one of many countries working together on an international level to study and research Alpha-1 Antitrypsin deficiency. In line with the goals of the International Alpha-1 community, the purpose of the Canadian registry is to identify and gather information about Canadians with Alpha-1 Antitrypsin deficiency so that Canadian scientists and affected individuals alike may participate in the international effort to combat this debilitating disorder. Because Alpha-1 Antitrypsin Deficiency is an under-diagnosed disease our registry is important and one of the best opportunities doctors and scientists have to learn more about this disease. If you have been diagnosed with Alpha-1 Antitrypsin Deficiency we urge you to consider joining the Canadian Registry.
If you would like to join our registry, you will be asked to sign a consent form and a medical release of information form. We ask that either you or your doctor send these forms back to the Data Management Centre.
A four page questionnaire will be sent to the doctor or doctors familiar with your deficiency. We are looking only for a simple medical history and breathing test and other routine laboratory results. We ask that these be filled out and sent back to the Data Management Centre by fax or mail.
All information will be stored in a confidential fashion in the Canadian Registry. That means that all paper records will be stored in locked cabinets in a locked room at a secure research facility. All electronic information (stored on computer or computer diskette) will be accessible only by password. All information will remain confidential and will be reviewed only by the investigators. In the event of data sharing with the International Registry for the analysis of large amounts of shared data, all patients will be identified by code number only. Your permission to gather health information will not be considered permission to involve you unknowingly in trial research. You will be contacted to seek permission for clinical trial participation in the event of intervention trials.
You may have your name withdrawn from the Registry at any time if you so wish.
What is the International Registry?
At present time, an International Registry has been set up with approximately 3500 participants. There are several goals of this registry. Initially, the registry will gather existing medical information about people who are deficient in the protein to understand better why some people remain healthy and free of lung disease and why some people develop emphysema. In the longer term, people who are participants in the registry may be asked if they are willing to participate in research trials that might improve our diagnosis, assessment or management of the disease. By coordinating research efforts at this international level, the registry scientists hope to make more rapid progress than individual scientists could achieve working in isolation.