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Ground-breaking technology to be used to study PHACE syndrome

 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!

 

Thank you!

 

Dawn Siegel, MD
Beth Drolet, MD

The PHACE syndrome Clinical Registry and Genetic Repository

Medical College of Wisconsin/Children’s Hospital of Wisconsin

New Email Contacts for NOVA

Our email address has changed:

For general purpose contact use: admin@novanews.org

For website concerns use: support@novanews.org

For patient support and research use: khall@novanews.org

Update on Research Studies-

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.

 

PHACE Registry- A message from Dr. Metry

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.

Warmest regards,

Denise Metry, MD
Associate Professor of Dermatology and Pediatrics
Baylor College of Medicine
Chief, Dermatology Service
Texas Children’s Hospital
Office: 832-822-3718

http://www.texaschildrens.org/carecenters/Dermatology/Phace.aspx

Blog Rules and Use

NOVA operates a public blog and message forums for purpose of the exchange of information. The blog and forums can be viewed by all. The blog and forums are not intended to be used as a replacement for professional medical information and advice. NOVA encourages all users to seek the medical advice from a physician experienced in the diagnosis and treatment of vascular anomalies.

The NOVA Message Blog and NOVA Message Forums are administered by the NOVA Board of Directors and are moderated by Karla Hall, Executive Director of NOVA. There are no conflicts of interest to report for our moderator.

All users must register with a valid user name and email address. User Names do not have to be real names. Users may elect to keep email and identity private from other users. Users may delete or modify their own postings/comments at any time. In accordance with the NOVA confidentiality policy (http://www.novanews.org/about-nova ), NOVA Administrators, Moderators or representatives will maintain patient confidentiality of all users. We will not publish identifiable information unless written authorization is given. NOVA can not maintain confidentiality of users if users post identifiable information in their own postings. For confidential correspondence with NOVA please email us at support@mail.novanews.org.

When posting information that is not based on personal experience, please provide references/citations. (journal sources, web sites or other sources of information)

Users to the Blog and Forms must to the best of their ability post true and accurate information. We request all users to refrain from “doctor bashing” on our forms.

All postings containing links, banners, information about products and services will be reviewed by the moderator for accuracy and content. Only products or services related to health and vascular anomalies will be allowed. Any posting about a service or product must receive prior permission from the NOVA Board of Directors. Postings that did not receive prior approval will be deleted without notice.

Comments on the Blog will be approved by the moderator and then allowed to be posted. The moderator views daily. Questions posted on the blog or the forums of a medical nature will be forwarded to the NOVA Medical Director or NOVA Medical Advisors. Replies will include the name and credentials of responder. Any medical professional that is a blog or forum user must clearly identify themselves and provide credentials. All blog and forum users must behave with respect and honesty. No profanity or obscenity is allowed. Biological terminology in a medical context will not be considered profane or obscene. NO solicitation is allowed. Violators will be warned via email one time only. Further abuse will result in a banning form use. All banning will be initiated by the Moderator and approved by the NOVA Board of Directors. Blog comments of a solicitous nature will be denied permission to post.

revised 9/26/2010