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TEXAS CHILDREN'S DERMATOLOGY
CLINIC
The PHACE syndrome patient registry
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Texas Children's
Dermatology Clinic |
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See also |
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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 and Baylor College
of Medicine and members of the Hemangioma Investigator
Group
–
physicians from multiple centers in the United States,
Canada 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:
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Sign a
consent form
English |
Spanish
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Provide a photograph of their child's hemangioma (digital or
polaroid)
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Complete an
enrollment
questionnaire
English |
Spanish
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 Caitlin Rose
Moncrief Memorial, and the Bernstein, Gochman and Stiles
Families.
Ways to Give
Donations are greatly needed to support PHACE and Hemangioma
research :
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.
Denise Metry, M.D.
Associate Professor of Dermatology and Pediatrics
Texas Children's Hospital
Baylor College of Medicine
6701 Fannin
St., CC 620
Houston, Texas 77030
Office: 832-822-3718
Fax: 832-825-3722
E-mail: dmetry@bcm.tmc.edu
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registry
