Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia

Completed

Conditions studied: Osler-Rendu-Weber Disease, Osler-Rendu Disease, Telangiectasia, Hereditary Hemorrhagic

In brief

This study will explore the factors that influence screening behaviors of adults diagnosed with hereditary hemorrhagic telangiectasia (HHT), an inherited condition in which blood vessel defects called arteriovenous malformations (AVMs) result in direct connections between arteries and veins. Patients most commonly have small AVMs called telangiectases on the tongue, face, hands, mouth, and throat and the mucosal linings of the nose and gastrointestinal tract. Recurrent nosebleeds are a hallmark of the disease. Large AVMs can also occur in various organs, causing sudden and life-threatening complications. The study will examine how patients think and feel about their condition and what actions they take to screen for internal symptoms of the disease. Men and women 18 years of age and older who have HHT may be eligible for this study. Participants fill out a 30-minute questionnaire, available in print or online, that includes questions about the participant s * beliefs about HHT * actions taken to screen for internal symptoms of HHT * experience with HHT * current health status, family history and demographic information

Key facts

Study ID
NCT00684879
Run by
National Human Genome Research Institute (NHGRI)
People needed
320
Starts
2008-05-21
Expected to finish
2016-01-07
Last updated by the study team
2019-11-25

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may not qualify if…

Where it is running

Full record on ClinicalTrials.gov

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