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Our laboratory and collaborators at the Medical College of Wisconsin/Children’s Hospital of Wisconsin are getting closer every day in our mission to identify the cause of PHACE syndrome. We are using whole genome sequencing to look for changes in genes that could cause PHACE syndrome. To successfully complete this work, we need to obtain more grant funding. Our grant will be much stronger if we have DNA from 100 families- that means getting a blood sample or buccal swab from both parents. We already have some initial results, but we can only make sense of these if we can compare the results to the parents’ DNA samples. In addition, the most helpful information is coming from tissue samples. If your child has any surgery for the revision of the hemangioma or aorta, please let us know!
Dawn Siegel, MD
Beth Drolet, MD
The PHACE syndrome Clinical Registry and Genetic Repository
Medical College of Wisconsin/Children’s Hospital of Wisconsin
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There are several new studies at the NIH for Vascular Anomalies. These are open studies and they are recruiting currently. NOVA is not directly affiliated or benefiting from any of these studies. We provide this information as a resource only.
1. Study to Demonstrate the Efficacy and Safety of Propranolol Oral Solution in Infants With Proliferating Infantile Hemangiomas Requiring Systemic Therapy (HEMANGIOL) http://clinicaltrials.gov/ct2/show/study/NCT01056341?cond=%22Hemangioma%22&rank=7&show_locs=Y#locn
2. Safety and Efficacy Study of Sirolimus in Complicated Vascular Anomalies http://clinicaltrials.gov/ct2/show/NCT00975819?spons=%22Children%27s+Hospital+Medical+Center%2C+Cincinnati%22&spons_ex=Y&rank=27
3. Genetic Analysis of PHACE Syndrome (Hemangioma With Other Congenital Anomalies) http://clinicaltrials.gov/ct2/show/NCT01016756?cond=%22Hemangioma%22&rank=27
For more information follow the links to the study information.
I hope this note finds everyone well! I am writing on behalf of the PHACE Registry with hope that you might consider enrolling your child. Registry data is proving to be an invaluable tool for PHACE research….we are about to begin a parent-inspired study to look at the migraine-like headaches known to occur in PHACE. We would love to include your child’s information in this and other studies!
We do our absolute best to ensure that your child’s identity is kept strictly confidential.
Enrollment in the Registry is straightforward and involves signing the consent form, completing a questionnaire and submitting a photograph of your child’s hemangioma. We can send you the information over email or by mail with an enclosed paid return envelope, whichever is most convenient for you.
Thank you so much for considering. If you can please respond with your preferred email or mailing address, or let me know if you would prefer not to enroll your child at this time, I would be most appreciative. If you have any questions whatsoever about the registry, please don’t hesitate to ask.
Denise Metry, MD
Associate Professor of Dermatology and Pediatrics
Baylor College of Medicine
Chief, Dermatology Service
Texas Children’s Hospital
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