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

National Center for Research Resources (NCRR)

Status: Completed

Conditions: Hereditary Hemorrhagic Telangiectasia

Study type: Observational

Funder types: Other; NIH

Identifiers

NCT00004649

199/11712

UVT-650

Details and patient eligibility

About

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.

Full description

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.

Sex: All

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

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