TEXAS CHILDREN'S DERMATOLOGY CLINIC
The PHACE syndrome patient registry

Texas Children's Dermatology Clinic Dermatology clinic home Infantile hemangiomas Hemangioma research    PHACE syndrome patient registry See also Other PHACE studies: PHACE genetic study PHACE head imaging study (pdf) A patients' experience: Kaylee's story (alopecia areata) Curriculum vitae: Denise W. Metry, M.D. Curriculum vitae: Alanna Flath Bree, M.D.

PHACE syndrome is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes or skin. The diagnosis is generally made from the physical examination, along with imaging of the head and chest, and an eye examination. PHACE is most common among female infants. The cause is unknown, and there is currently no means of prevention.

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 of a child affected with PHACE syndrome are encouraged to enroll in the registry. All information on your child is kept confidential; only non-identifying information will be provided to researchers. Caregivers will be asked to sign a consent form, provide a photograph of their child's hemangioma (digital or polaroid), and complete an enrollment questionnaire. This information may be sent via email or regular mail to the registry director, Dr. Denise Metry, whose contact information is listed below. Please note that researchers of the registry cannot provide medical advice for your child's particular case.

We sincerely appreciate your interest, as your participation plays a key role in helping further our understanding of PHACE syndrome. The PHACE Registry is generously supported by Texas Children's Hospital, the Glaser Pediatric Resource Network, the Caitlin Rose Moncrief Memorial and private donations.

Ways to Give
Donations are greatly needed to support :

• The PHACE Registry

• The 1st PHACE Family Meeting and Research Conference in November, 2008

• Research endeavors that will ensue

Donate online - under Designation select "Other" and another entry box will appear. Type: Texas Children's Hospital PHACE fund. 

Make a gift by mail (pdf) - print and complete this form.  Under "I would like my gift to support" check Other Service or Department and write: Texas Children's Hospital PHACE fund.

An acknowledgement letter will be sent indicating the amount given for tax purposes. We gratefully thank you in advance for your generosity in supporting PHACE research efforts.

Caregivers or patients interested in enrolling in the PHACE registry should please contact:

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: dmetry@bcm.tmc.edu

Additional Resources

• Vascular Birthmarks Foundation
• National Organization of Vascular Anomalies
• PHACES Association