What is the Alpha-1 Canadian Registry?

The Alpha-1 Canadian Registry is a confidential database where Canadian researchers store information shared with them by patients with alpha-1 antitrypsin deficiency. Gathering this information in one place allows researchers to learn more about the disease and how it affects patients. The Canadian Registry was established by Dr. Ken Chapman in 1999 to facilitate research initiatives and promote the development of treatment for alpha-1. Physicians use the registry to track patient progress, which is important for improving the quality of life for those living with this condition. The registry also keeps patients up to date on research advances, treatment options, events, and opportunities to participate in clinical trials.

 

Who is eligible to enrol?

Individuals of all ages diagnosed with alpha-1 antitrypsin deficiency living in Canada are encouraged to enrol.

 

What are the benefits?

  • Opportunity to participate in clinical trials for new treatments
  • Access to experts in alpha-1 clinical care through participation in clinical trials
  • Access to up to date information on research advances, treatment options, and events

 

What is the Alpha-1 International Registry?

There is currently an International Alpha-1 Registry with approximately 3500 participants. The goal of this International Registry is to gather existing medical information from those with alpha-1 to better understand why some people remain healthy and free of lung disease, and why some people develop emphysema. Registry members are also invited to participate in research trials that might improve diagnosis, assessment or management of the disease. By coordinating research efforts at an international level, the registry scientists hope to make more rapid progress than individual scientists could achieve working in isolation.

 

How can my participation help promote research?

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, so that Canadian scientists and affected individuals alike may participate in the international effort to combat this disorder. One of the largest obstacles of alpha-1 research is finding a sufficient number of volunteers to participate in clinical research. Through the voluntary participation of registry members (who are given the option to accept or decline research invitations), medical and scientific investigators are motivated to carry out research. Alpha-1 antitrypsin deficiency is an under-diagnosed disease, and our registry is one of the best opportunities doctors and scientists have to learn more about this disease.

 

How confidential is the Registry?

All information will be stored according to the Personal Health Information Protection Act of Ontario (PHIPA, 2004). All information will remain confidential and will be reviewed only by qualified investigators. Paper records will be stored in locked cabinets in a locked room at a secure research facility and electronic information (stored on computer or computer diskette) will be accessible only by password. 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.

 

How do I enrol?

Click here to find out more details.

 

Information adapted from the Alpha-1 Foundation brochure, "The Alpha-1 Research Registry: Be Part of Finding a Cure".