Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry
(HHT Trial)
Trial Summary
What is the purpose of this trial?
The goal of this study is to better understand HHT, the symptoms and complications it causes ("outcomes") and how the disease impacts people's lives. The investigators are aiming to recruit and gather information together in the Registry from 1,000 HHT patients from four HHT Centres of Excellence in North America. The Investigators will collect long-term information about the people in the Registry, allowing the investigators to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease.
Research Team
Marie E Faughnan, MD
Principal Investigator
Unity Health Toronto
Eligibility Criteria
Inclusion Criteria
Treatment Details
Interventions
- Registry Participation (Behavioural Intervention)
Find a Clinic Near You
Who Is Running the Clinical Trial?
Unity Health Toronto
Lead Sponsor
Dr. Sharon Straus
Unity Health Toronto
Chief Medical Officer
MD and MSc in Clinical Epidemiology, University of Toronto
Altaf Stationwala
Unity Health Toronto
Chief Executive Officer
Bachelor's degree in Health Administration, University of Ottawa
Dartmouth College
Collaborator
Sian Leah Beilock
Dartmouth College
Chief Executive Officer since 2023
PhD in Cognitive Psychology and Neuroscience from Miami University
Estevan Garcia
Dartmouth College
Chief Medical Officer since 2024
MD from Stony Brook University School of Medicine
Cure HHT
Collaborator