MedTrace Logo

Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia

NCT00684879 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 320

Last updated 2019-11-25

No results posted yet for this study

Summary

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

Conditions

  • Osler-Rendu-Weber Disease
  • Osler-Rendu Disease
  • Telangiectasia, Hereditary Hemorrhagic

Sponsors & Collaborators

  • National Human Genome Research Institute (NHGRI)

    lead NIH

Principal Investigators

  • Barbara B Biesecker · National Human Genome Research Institute (NHGRI)

Eligibility

Min Age
18 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2008-05-21
Completion
2016-01-07

Countries

  • United States

Study Locations

More Related Trials

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT00684879 on ClinicalTrials.gov