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

N

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

Trial contacts and locations

0

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Data sourced from clinicaltrials.gov

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