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

This study has been completed.

First Received: February 24, 2000 Last Updated: June 23, 2005 History of Changes

Sponsor:	National Center for Research Resources (NCRR)
Collaborator:	University of Vermont
Information provided by:	Office of Rare Diseases (ORD)
ClinicalTrials.gov Identifier:	NCT00004649

Purpose

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.

Condition
Hereditary Hemorrhagic Telangiectasia

Study Type:	Observational
Study Design:	Screening

Resource links provided by NLM:

Genetics Home Reference related topics: hemophilia hereditary hemorrhagic telangiectasia

U.S. FDA Resources

Further study details as provided by Office of Rare Diseases (ORD):

Study Start Date:

May 1995

Detailed 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.

Eligibility

Genders Eligible for Study:	Both
Accepts Healthy Volunteers:	No

Criteria

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

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT00004649

Sponsors and Collaborators

National Center for Research Resources (NCRR)

University of Vermont

Investigators

Study Chair:

Alan Guttmacher

University of Vermont

More Information

No publications provided

Study ID Numbers:	199/11712, UVT-650
Study First Received:	February 24, 2000
Last Updated:	June 23, 2005
ClinicalTrials.gov Identifier:	NCT00004649 History of Changes
Health Authority:	United States: Federal Government

Keywords provided by Office of Rare Diseases (ORD):

genetic diseases and dysmorphic syndromes
hematologic disorders
hereditary hemorrhagic telangiectasia
rare disease

Additional relevant MeSH terms:

Hemorrhagic Disorders
Cardiovascular Abnormalities
Hematologic Diseases
Telangiectasia, Hereditary Hemorrhagic
Vascular Malformations

Telangiectasis
Vascular Diseases
Cardiovascular Diseases
Congenital Abnormalities
Hemostatic Disorders

ClinicalTrials.gov processed this record on November 27, 2009