Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
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1994 - 2016
100,000 BIRTHMARKS
100,000 LIVES GIVEN NEW HOPE
Dr. Linda Rozell-Shannon, PhD President and Founder
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Research Studies

Adults with PWS Study Participants Needed

 


 

Port Wine Stain Study Finds New Genes

 


 

Study for Investigational Treatment for PWS

 


 

Study of Epidiolex for Seizures in Sturge-Weber Syndrome

 


 

Medical College Researcher to Study Vascular Anomalies

 


 

Urgent Need For Participants in Hemangioma Study For Babies Under 1 Year of Age

 


 

Propanolol Use in Infants vs. Steroids Study

Hemangiomas are relatively common lesions in infants. Most go away spontaneously after one year of life and do not need treatment. Others require treatment because they cause significant symptoms such as pain, or difficulty with breathing, eating or ambulating. Steroids have classically been used to treat hemangiomas and help to shrink them in 1/3 - 2/3 of patients. Unfortunately, steroids have many side effects in babies so physicians have sought other ways to treat them. Recently, the use of propranolol, a heart medication, was serendipitously found to reduce the size of hemangiomas. It appears to have many fewer side effects than steroids but it is not yet known if it works as well as steroids. This study seeks to compare the effect and the side effects of propranolol versus steroids for treating hemangiomas that cause symptoms in infants. Read more here

 


Has your baby developed infantile hemangioma, also known as strawberry birthmark?

If your child has developed infantile hemangioma (also known as strawberry birthmark), a new research study may be of interest to you.
THIS STUDY MAY BE APPROPRIATE FOR YOUR CHILD IF HE/SHE:
· Is between 35-150 days old
· Has at least one hemangioma 1.5 cm in diameter
· Has not received previous treatment for hemangioma
Read more

 


$1.9 Million NIH Grant Supports Research in the Most Common Soft Tissue Tumor in Children

A nearly $2 million grant from the National Institutes of Health (NIH) will help investigators at Nationwide Children’s Hospital search for biomarkers that may be linked to the development and outcome of hemangiomas, the most common soft tissue tumor in children. Nationwide ... Read more (pdf)

 


IH Study at UC Irvine (pdf)

Dr. Brandie Metz and colleagues from the Dermatology Department at the University of California, Irvine are conducting a research study looking for infants with proliferating infantile hemangiomas (IHs) that require medication. This study will evaluate the use of an investigational drug, V0400SB (also known propanolol) in the treatment of hemangiomas. Click above for more information.

 


Longitudinal Study of Neurologic, Cognitive and Radiologic Outcomes in PHACE Syndrome.

What is PHACE syndrome? A small group of patients with skin hemangiomas (non-cancerous growth of blood vessels appearing as a type of birthmark) on the head and neck may also have additional disorders associated with PHACE Syndrome. PHACE refers to Posterior fossa anomalies (a structural brain abnormality); Hemangioma (growth of blood vessels) appearing on the skin; Arterial abnormalities (arteries are blood vessels in your body that carry blood away from your heart); Cardiac (heart) abnormalities; and abnormalities of the Eye. Your child may have one or several of the abnormalities listed above as part of the PHACE syndrome. ).

 

To participate in this trial:
. Your child must be diagnosed with definite or probable PHACE
syndrome
(according to the 2009 criteria)
. Child must be 4, 5 or 6 years of age.
. You and your child must be available to travel to Children's
Hospital
of Wisconsin for scheduled outpatient evaluations over a one to two day
period (limited travel funds are provided by the study)
. No drugs are used for this study.

 

Why is this study important? While it is known that children with PHACE syndrome may have abnormalities of the blood vessels in the brain of structural brain abnormalities, it is not known what the significance of these abnormalities is or how this affects children as they get older. As a result, it is difficult for physicians to counsel parents of infants with PHACE syndrome regarding future expectations or problems that may be encountered in regards to development. This project is the first study to look at specific areas of development in children with PHACE syndrome through neurologic, psychological and cognitive evaluations. The data used from this study will be used in the development of standardized testing to establish clinical guidelines for the management of children with PHACE syndrome.

 

About 30 children will be enrolled in this study. We believe that the information gained in this study will better characterize PHACE syndrome, and establish guidelines for diagnostic neuroimaging of at-risk infants. For more information about the PHACE study, please contact Dr. Beth Drolet:

 

Beth Drolet, MD
Professor of Dermatology and Pediatrics
Medical College of Wisconsin
Medical Director of Dermatology and Birthmarks and Vascular Anomalies
Children’s Hospital of Wisconsin
9000 W Wisconsin Ave, Suite B260
Milwaukee, WI 53226
Phone: 414-955-2815
Fax: 414-456-6518
Email: bdrolet@mcw.edu

 


Has your child been diagnosed with “hemangiomas”, low levels of platelets, and gastrointestinal bleeding?

Your child could have a recently discovered disorder entitled multifocal lymphangioendotheliomatosis with thrombocytopenia (see articles). This disease has also been titled cutaneovisceral angiomatosis with thrombocytopenia in the medical literature. Multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT) is a rare vascular disorder characterized by multiple red- brown skin lesions, often misdiagnosed as hemangiomas. Children with this disease have similar lesions in the stomach and intestines which tend to bleed, especially during the first year of life leading to very low blood counts. The children suffer from profound thrombocytopenia (low platelet counts, below 30,000-50,000). Although a relatively newly described entity, MLT was and continues to be misdiagnosed as blue rubber bleb nevus syndrome, diffuse hemangiomatosis, Kasabach-Merritt phenomenon, and hereditary hemorrhagic telangiectasia.

 

The Birthmark and Vascular Anomalies Center at Children’s Hospital of Wisconsin has created an interdisciplinary task force to study infants with vascular disorders and low platelets. The task force is a collective group of clinicians and researchers from diverse pediatric specialties including; dermatology, neonatology, otolaryngology, gastroenterology, hematology/oncology, genetics and pathology. We have designed a registry to collect information on all patients with MLT. The registry will address many unanswered questions regarding risk factors and treatment options for this rare disease. Dr. Paula North, who originally described this disease, will review all biopsy specimens. This data will be used to better understand the disease, design diagnostic criteria, and create treatment guidelines. Ultimately the project will aim to obtain national funding to study the cause of MLT and generate safe and effective therapeutic interventions.

 

If you think your child has multifocal lymphangioendotheliomatosis with thrombocytopenia/cutaneovisceral angiomatosis with thrombocytopenia please contact us so we can learn more about this disease. This study is approved by our Internal Review Board and we will send you a consent form.

 

Beth Drolet, MD
Professor of Dermatology and Pediatrics
Medical College of Wisconsin
Medical Director of Dermatology and Birthmarks and Vascular Anomalies
Children’s Hospital of Wisconsin
9000 W Wisconsin Ave, Suite B260
Milwaukee, WI 53226
Phone: 414-955-2815
Fax: 414-456-6518
Email: bdrolet@mcw.edu

 

Multifocal Lymphangioendotheliomatosis With Thrombocytopenia
A Newly Recognized Clinicopathological Entity

Article Located at Archives of Dermatology

Multifocal Lymphangioendotheliomatosis With Thrombocytopenia:
A Rare Cause of Gastrointestinal Bleeding in the Newborn Period

Article Located at Pediatrics


PHACES Study

Doppler imaging study of children with PHACES syndrome (OMIM #606519) at the Morgan Stanley Children’s Hospital of New York, Columbia University Medical Center.

 


 

PWS Study

Dr. J. Stuart Nelson and colleagues at the Beckman Laser Institute and Medical Clinic (BLIMC) are looking for port wine stain (PWS) patients who wish to have treatment using new technology.

 

Very often, the treatment of light pink and red PWS lesions commonly seen in infants and young children can be extremely frustrating for both the patient’s family and the physician. The reason for poor response by such lesions to laser treatment is that the blood vessels are very, very small, often less than 30 micrometers in diameter. As a result, there is not enough blood available in these very small vessels to absorb the incoming laser light. Little absorption of the laser light does not induce adequate heat generation to sufficiently destroy the vessel. One approach to overcome this limitation is to use a wavelength of laser light that are maximally absorbed by blood. Use of the 577 nm wavelength would result in a two-fold increase in the amount laser light absorbed as compared to the currently used 585 and 595 pulsed dye lasers. Candela Laser Corporation has constructed a PDL operating at a wavelength of 577nm. Our specific aim is to determine whether the use of 577 nm laser light will improve PWS lesion blanching.

 

If you or a family member of a patient affected by a PWS wish to have treatment using the laser technology described above, please contact the Vascular Birthmark and Malformations Diagnostic and Treatment Center Clinical Coordinator at the BLIMC, Andrea Giancarli, by telephone (949-824-4269) or e-mail (afgianca@uci.edu).

 


 

Linda Rozell-Shannon is doing a research study for her PhD and needs to know if there are any moms of babies with hemangiomas who had a placenta problem and also had pathology done on their placenta so that the pathology may be available for our medical research team to review. If anyone meets this criteria: 1) had a baby with a hemangioma; and 2) had a placenta issue; and 3) has the pathology still available on their placenta (probably at the hospital where the baby was born), please contact Linda at vbfpresident@gmail.com or use the contact form.


PS: If you were told you had a placenta problem your placenta was likely "examined" and that would mean it may still be available in a block of frozen tissue for further study. You may have to call your ob/gyn office to verify.

 


 

Use of the Atkins diet for children with Sturge-Weber Syndrome

Principal Investigator: Eric Kossoff, MD

You are invited to join a study enrolling children ages 2-18, with proven Sturge-Weber syndrome on an MRI, for a study of the Hopkins modified Atkins diet for treating intractable seizures. Children must have at least one seizure every month and have tried at least 2 anticonvulsant medications to enroll. The study involves 3 visits to Johns Hopkins over 6 months, which must be covered by the parent or insurance. Blood and urine studies will be obtained at the first and last visits.

For more information, contact Dr. Eric Kossoff at 410-614-6054 or ekossoff@jhmi.edu

 


 

PHACES Syndrome Families

PHACE (S) syndrome- this is defined as Posterior fossa and other brain malformations, Hemangiomas (typically facial segmental), Arterial anomalies, Coarctation of the aorta and other cardiac defects, Eye abnormalities (e.g. microphthalmia, optic nerve hypoplasia) and Sternal malformations, supraumbilical raphe.

 

Criteria used to determine eligibility: Subjects with a facial hemangioma plus at one additional feature may enroll in this study.

 

You will not personally benefit or get specific results from participating in this study. However, by serving as a subject, you may contribute new information which may benefit patients in the future.

 

Time commitment: Approximately 15 minutes for the blood draw (this can be shipped from outside laboratories) and 15 minutes to complete the surveys.

 

Contact information:

Dawn Siegel, MD
Medical College of Wisconsin
Pediatric Dermatology Department
8701 Watertown Plank Rd. TBRC Ste. C2010 Milwaukee, WI 53226
Phone: 414-955-2819
Email: dsiegel@mcw.edu

 


 

PHACE Syndrome Registry. Parents of children with PHACE Syndrome registry

New paper on PHACE Syndrome (pdf)

 


 

The Effect of Facial Hemangiomas on Psycho-Social Development

Elissa Uretsky- Rifkin, M.Ed. CMHC is conducting this survey for Hemangioma ONLY.
This study has been approved by the Human Studies Committee at The Washington University Medical Center in St. Louis, MO. If you are 14 years old or over and would be willing to answer three short questionnaires, please volunteer for this research study. This study is investigating the psycho-social impact of growing up with an hemangioma on the face.

 

You must meet the following criteria to be in the study:

Your birthmark must have been diagnosed as an hemangioma (either deep, superficial or mixed), NOT a Port-Wine Stain or other type of malformation.
You did not receive any treatment prior to age 14 to remove, lighten or reduce the Hemangioma.
It must have covered at least 10% of the face (size of an egg) and been visible to other people.
You must have attended a public or private school. (not home schooled)
You must be able to fill out the questionnaire without help from another person.
All participants must sign a consent form, and if you are under 18 years of age a parent or legal guardian must sign and approve your participation in the study.
All information is strictly confidential. Your answers will be sent to the scoring coordinator anonamously (without your identity disclosed).

Elissa Uretsky- Rifkin, M.Ed. CMHC
Clinical Mental Health Specialist
Principal Investigator
studyvb@aol.com