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Through this study, researchers will be collecting information and building a database registry about patients with hereditary hemorrhagic telangiectasia (HHT) and inherited vascular malformations. By studying information in the database, researchers hope to learn more about these diseases. Specifically, researchers will consider how factors such as a person’s genetic make-up, dietary choices, and environmental exposures combine to influence disease progression. They may also be able to identify clinical trials of potential interest to patients enrolled in the registry.
This study is open to patients of all ages who are seen at the HHT Center of Excellence of UPMC and the University of Pittsburgh. Males and Females: All ages
Participants or their parent/guardian will be asked to complete quality-of-life questionnaires. Blood and saliva samples will be collected from participants. Although no tissue samples will be collected solely for this research, biological samples remaining from other medical procedures enrolled patients undergo may be included in the study repository. Visits: None beyond routine visits for the patient’s condition Duration: Not applicable
HHT Center of Excellence of UPMC and the University of Pittsburgh Genetic and Genomic Medicine Research
Christopher Faber, MD
For more information about the study or enrollment, please contact: Jennifer Baker, MA 412-692-6378
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh One Children’s Hospital Way 4401 Penn Ave. Pittsburgh, PA 15224
In addition to the main hospital, Children's has many convenient locations in other neighborhoods throughout the greater Pittsburgh region.
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