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Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry — HHT  

Hereditary Hemorrhagic Telangiectasia Clinical Trial

Official title:
Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry

Clinical Trial Summary

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.

Clinical Trial Description

Background and Rationale HHT has an estimated prevalence of 1 in 5000, affecting children and adults, in multiple organs. The disease is characterized by the presence of vascular malformations (VMs), including arteriovenous malformations (AVMs) of the lung, liver, brain, spinal cord and smaller mucosal lesions (telangiectasia) of the nose, mouth and GI tract. These lesions lead to acute and chronic bleeding, stroke, heart failure and death. Treatments are currently mostly limited to managing complications, while approximately 90% of adults have ongoing symptoms, despite best surgical and medical therapies. With recent drug development related to angiogenesis, there is hope for effective novel therapies. Investigators, experts, the International HHT Guidelines, Pharma representatives, the CDC and HHT patient advocates (curehht.org) all agree that there is an urgent need for natural history data in this disease, with characterization of clinical outcomes, to allow patients to benefit from the explosion of drug development in the field. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT04150822
Study type Observational [Patient Registry]
Source Unity Health Toronto
Contact
Status Active, not recruiting
Phase
Start date November 1, 2018
Completion date December 2028
View Details
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