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NCT00684879
Screening Behavior in Adults With Hereditary Hemorrhagic Telangiectasia
trial in Osler-Rendu-Weber Disease in 320 participants. Completed in 7 January 2016.
Quick facts
| Lead sponsor | National Human Genome Research Institute (NHGRI) |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 320 |
| Start date | 21 May 2008 |
| Estimated completion | 7 January 2016 |
| Sites | 1 location across United States |
Conditions studied
- Osler-Rendu-Weber Disease — all drugs for Osler-Rendu-Weber Disease →
- Osler-Rendu Disease — all drugs for Osler-Rendu Disease →
- Telangiectasia, Hereditary Hemorrhagic — all drugs for Telangiectasia, Hereditary Hemorrhagic →
Sponsor
National Human Genome Research Institute (NHGRI)
Who can join
18 and older, any sex, with Osler-Rendu-Weber Disease or Osler-Rendu Disease. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
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
Publications & conference data
No peer-reviewed publications indexed yet for this trial. Completed trials usually publish results within 12-18 months.
Verify or expand the search:
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Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT00684879 (US National Library of Medicine, public domain)
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by National Human Genome Research Institute (NHGRI)
- Last refreshed: 25 November 2019
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT00684879.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing