Registry

CHAEN is establishing a Canadian HAE Registry (CHAER) whose purpose is to establish Canada as a global leader in Hereditary Angioedema research and care, with a vibrant and collaborative community of patients, researchers, and healthcare providers working to optimize patient outcomes and quality of life in adherence with best practices as defined by Canadian and International guidelines. The Canadian HAE Registry will provide real-time and comprehensive information to community stakeholders.

CHAER will:

• facilitate monitoring trends in patient health with the aim of providing health outcome data to assess and respond to patient needs as well as identify health problems that need prompt attention
• help establish a communication network that can help identify locations and/or organizations where patients can receive treatment and education
• identify resource needs and help organize and monitor national distribution and use of treatment products
• facilitate research and knowledge dissemination about HAE

Key elements:

• Diagnostic data entered by CHAEN physicians
• Tracking of medications issued
• Patient input of medication usage, attacks and QofL
• Provide anonymized data for research