HHT Outcomes Registry
We hope to raise $20 000 for the HHT Outcomes Registry by the end of 2019/2020. The Registry contains detailed clinical information about all aspects of HHT, from nosebleeds to genetics, and follows people through the course of their diseases. The goals are to learn about the factors that determine disease severity and outcomes and how people respond to therapy, and to help connect HHT patients with therapeutic trials of interest. Information is kept secure and confidential, de-identified for research purposes, eventually collected from thousands of consenting patients across North America. The money raised will support the cost of management staff to link a Canadian HHT Treatment Centre of Excellence to the registry.