TEXAS CHILDREN’S HOSPITAL PHACES PATIENT REGISTRY
Researchers at Texas Children's Hospital/Baylor College
of Medicine, members of the Hemangioma Investigator Group - physicians from 7 centers in the United States and Spain who are researching many aspects of hemangiomas - have developed a patient
registry, which is designed to help clinicians and basic scientists understand the cause of PHACE syndrome, with the hope of finding possible treatment and prevention."
Caregivers or patients interested in enrolling in the PHACE registry visit
http://www.texaschildrenshospital.org/carecenters/Dermatology/Phace.aspxact:
Denise Metry, M.D.
Associate Professor of Dermatology
and Pediatrics
Texas Children's Hospital
Baylor College of Medicine
6621 Fannin St., CC 620.16
Houston, Texas 77030
Office: 832-822-3718
Fax: 832-825-3722
E-mail:
GENETIC BASIS OF PHACES
Clinical Investigator:
Dawn Siegel, MD
Assistant Professor Dermatology and Pediatrics
Oregon Health & Science University
Condition being studied: PHACE (S) syndrome- this is defined as Posterior fossa and other brain malformations, Hemangiomas (typically facial segmental), Arterial anomalies, Coarctation of the aorta and other cardiac defects, Eye abnormalities (e.g. microphthalmia, optic nerve hypoplasia) and Sternal malformations, supraumbilical raphe.
Contact information:
Dawn Siegel, MD
Mail Code: CH16D
3303 SW Bond Ave.
Portland, OR 97239
Office: (503) 346-0029
