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Study of the Natural History and Genotype-Phenotype Correlations of Hereditary Hemorrhagic Telangiectasia Patients



Study of the Natural History and Genotype-Phenotype Correlations of Hereditary Hemorrhagic Telangiectasia Patients

For Condition: Hereditary Hemorrhagic Telangiectasia
Status: Completed
Sponsor(s): National Center for Research Resources (NCRR) , University of Vermont
Synopsis: OBJECTIVES: I. Collect data regarding the natural history of hereditary hemorrhagic telangiectasia (HHT). II. Establish genotype-phenotype correlations in HHT. III. Create a database of information for researchers throughout the world.
Details: PROTOCOL OUTLINE: Patients complete a self-administered natural history questionnaire in a multiple choice format. Questionnaire is completed by a population consisting of males and females of all ages and ethnic backgrounds. Data are collected and made available to all researchers.
Eligibility:
Study Type:
  Observational, Screening
Minimum Age/Maximum Age: /
Genders: Both
Protocol Entry Criteria: - Diagnosed hereditary hemorrhagic telangiectasia (Osler-Rendu-Weber disease) with recurrent epistaxis, telangiectases, and visceral vascular anomalies
Total Enrollment: 

Location and Contact Information:

Overall Study Official:
AlanGuttmacher,  Study Chair,  University of Vermont


Additional Information:
Study ID Numbers:
  199/11712;  UVT-650
Study Start Date: May 1995
Record last reviewed: December 2001
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00004649

Other Hereditary Hemorrhagic Telangiectasia Studies:
1. Study of the Natural History and Genotype-Phenotype Correlations of Hereditary Hemorrhagic Telangiectasia Patients

2. Phase II Pilot Study of Octreotide, a Somatostatin Octapeptide Analog, for Gastrointestinal Hemorrhage in Hormone-Refractory Hereditary Hemorrhagic Telangiectasia and Senile Ectasia

3. Phase III Randomized, Placebo-Controlled, Crossover Study of Soy Protein Isolate for Hereditary Hemorrhagic Telangiectasia

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