Hereditary Hemorrhagic Telangiectasia (HHT) Research Outcomes Registry

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational [Patient Registry]
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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: No
View:

• Participants diagnosed with HHT by the Curacao criteria (either 3+ clinical diagnostic criteria or genetic diagnosis).

• Capable of giving informed consent in person or via a substitute decision maker

• >18 years

Locations
Other Locations
Canada
St. Michael's Hospital
Recruiting
Toronto
Contact Information
Primary
Marie E Faughnan, MD MSc FRCP
marie.faughnan@unityhealth.to
416-864-6060
Backup
Dewi S Clark, BSc, MHSc
dewi.clark@unityhealth.to
416-360-4000
Time Frame
Start Date: November 1, 2018
Estimated Completion Date: December 2028
Participants
Target number of participants: 1000
Sponsors
Leads: Unity Health Toronto
Collaborators: Dartmouth College, Cure HHT

This content was sourced from clinicaltrials.gov

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