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

National Center for Research Resources (NCRR)

Overview

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.

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.

Study Type

OBSERVATIONAL

Conditions

Hereditary Hemorrhagic Telangiectasia

Eligibility

Sex: ALLMin age: 0 Years

Medical Language ↔ Plain English

* Diagnosed hereditary hemorrhagic telangiectasia (Osler-Rendu-Weber disease) with recurrent epistaxis, telangiectases, and visceral vascular anomalies

Data from ClinicalTrials.gov

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