NCT00684879|Completed
Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia
Illness Perceptions and the Health Belief Model: Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia
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Illness Perceptions and the Health Belief Model: Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia
Sponsor study identifier
Secondary identifiers
observational
320
1 country
1
Study Start
May 21, 2008
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
Not reported
Date not reportedStudy Completion
January 7, 2016
Date type not reportedThis date has not been verified as actual or estimated.
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
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
January 7, 2016
Date type not reportedThis date has not been verified as actual or estimated.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
May 21, 2008
Date type not reportedThis date has not been verified as actual or estimated.
May 24, 2008
Actual (reported)May 28, 2008
Actual (reported)January 7, 2016
Date type not reportedThis date has not been verified as actual or estimated.
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
Bayrak-Toydemir P, Mao R, Lewin S, McDonald J. Hereditary hemorrhagic telangiectasia: an overview of diagnosis and management in the molecular era for clinicians. Genet Med. 2004 Jul-Aug;6(4):175-91. doi: 10.1097/01.gim.0000132689.25644.7c.
Guttmacher AE, Marchuk DA, White RI Jr. Hereditary hemorrhagic telangiectasia. N Engl J Med. 1995 Oct 5;333(14):918-24. doi: 10.1056/NEJM199510053331407. No abstract available.
Barbara B Biesecker
National Human Genome Research Institute (NHGRI)
320 participants (actual enrollment reported by the registry).
First Submitted
May 24, 2008
First Posted
May 28, 2008
Study Start
May 21, 2008
Date type not reportedThis date has not been verified as actual or estimated.
Bevacizumab In Hereditary Hemorrhagic Telangiectasia
Contact the study team to confirm eligibility.
Rand CS. Measuring adherence with therapy for chronic diseases: implications for the treatment of heterozygous familial hypercholesterolemia. Am J Cardiol. 1993 Sep 30;72(10):68D-74D. doi: 10.1016/0002-9149(93)90014-4.
Study Completion
January 7, 2016
Date type not reportedThis date has not been verified as actual or estimated.
Last Updated
November 25, 2019
Record last verified: 2016-01-07
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