For Researchers
HHT Connect collects disease-specific natural history data directly from individuals with HHT, with the goal of improving the understanding of HHT and informing treatment development. Registry questionnaires were built from both common data element standards and customized questions and cover the following topics:
- Socio-demographics
- Medical history and diagnosis
- Treatment and disease progression
- Management of care
- Quality of life
We are interested in sharing our data with you! If you would like to use data from the HHT Connect Patient Registry for a research project or to notify participants about another study, please contact our registry administrator at hhtconnect@curehht.org for more information. Use of the registry is contingent upon project approval by the HHT Connect Registry Advisory Board.