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Our HHT Registry

The purpose of this study is to collect a bank of information about people living with HHT to better understand HHT, the symptoms and complications it causes and how the disease impacts people's lives.

Age & Gender

18 years ~ 99 years
Male, Female, Gender Inclusive

Visit Availability

Visits can be combined with regular clinical appointments

Location

United States (Nationwide)

What will be asked of you

We will collect HHT related information about your health from your medical records when you agree to participate as well as ask for an update about your health every year. You will be asked to enter some information about your helath into a patient portal website and will be asked to give us one saliva sample.

In-person visits:
We would speak with you during your regular HHT Clinic visit or by phone

Phone or online visits:
Once a year for up to 10

Total length of participation:
We would be collecting data from you every year for up to ten years

Looking for Specific Volunteers

Able to participate:

You are an adult with a clinical diagnosis of HHT.

Not eligible if:

If you are an adult that does not have a clinical diagnosis of HHT

Contact the Team

Visit Location

Contact & Visit Location

Primary Contact

Visit Study Website

Primary Visit Location

Benign Hematology Outpatient Center
UNC Eastowne Medical Office Building
100 Eastowne Dr, Chapel Hill, NC 27514, USA

Additional Study Information

Principal Investigator

Raj Kasthuri
Medicine-Hematology

Study Type

Clinical or Medical
Registry

Study Topics

Rare Diseases

IRB Number

21-2105

Copyright © 2013-2022 The NC TraCS Institute, the integrated home of the NIH Clinical and Translational Science Awards (CTSA) Program at UNC-CH. This website is made possible by CTSA Grant UL1TR002489 and the National Center for Advancing Translational Sciences.

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Questions?

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