On June 6, 2006 NOVA  awarded the first research grant to to Texas Children's Hospital for the establishment of a PHACES patient registry. 

The cause of PHACE Syndrome is unknown and there is currently no means of prevention.  The registry is a central database of patient information, which will provide blood samples to scientists studying PHACES and track important information among patients so that collaborative research between physicians in different medical disciplines can be performed. 

This registry is the first effort to help clinicians and basic scientists understand the cause of PHACES, with the hope of finding possible treatment and prevention.  The registry serves as an educational resource for families.

A minimum of 250 children will be expected to participate in the registry.  The estimated duration of the study is at least 5 years.  Patients will be asked to provide family and medical history in the form of a written questionnaire.  They will also be asked to provide permission for the release of medical information and permission for photographs.  Patients will also be asked to donate 5-10ml of blood. 

Dr. Denise Metry of Texas Children's Hospital has been generously provided a research study coordinator for this project through a grant from the Glaser Pediatric Resource Network.  NOVA is honored to be able to join in the funding of this project.

NOVA provides this grant from the generous donations made to the Caitlin Rose Moncrief Memorial.  The Memorial was established at the request of Tom and Michelle Moncrief in memory of their precious daughter Caitlin who passed away in March 2006. 

Donations to the memorial are restricted for PHACES Research.& Assistance

Please Send Donations to:

Caitlin Rose Moncrief Memorial

c/o NOVA

PO Box 0358 Findlay OH  45840

For More information write

admin@mail.novanews.org

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NOVA PROVIDES THIS INFORMATION TO FAMILIES AS A RESOURCE. IT IS NOT INTENDED TO ENGAGE IN THE PRACTICE OF MEDICINE OR TO REPLACE THE PHYSICIAN. NOVA DOES NOT CLAIM TO HAVE MEDICAL KNOWLEDGE. NOVA DOES NOT ENDORSE ANY PARTICULAR PHYSICIAN, TREATING FACILITY OR TREATMENT PROTOCAL. IN ALL CASES NOVA AND ITS BOARD OF DIRECTORS RECOMMENDS THAT YOU SEEK THE OPINION OF A PHYSICIAN EXPERIENCED IN THE MANAGEMENT OF HEMANGIOMAS AND VASCULAR MALFORMATIONS. 

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