The Vascular Anomalies Program at Seattle Children’s is nationally recognized for its expertise and innovations in research. Through our collaborative approach, we are learning more about each condition, testing new therapies and standardizing clinical care for children with vascular anomalies (VAN).
Our program has an array of VAN research studies currently underway. Below is a brief summary of our current research efforts. If you would like to learn more about our research or for information about participating in one of our studies, please contact our research coordinator by email or at 206-987-1927.
Single-stage removal of head and neck venous malformations with glue embolization and surgery
Venous malformations (VM) are spaghetti-like clusters of blood-filled veins and can be disfiguring and painful. If they are accidentally bumped or cut, they can bleed profusely, making removal a challenging process.
Dr. Jonathan Perkins and his research team have pioneered a safe method to remove VMs in the head and neck by first injecting n-butyl cyanoacrylate (n-BCA) glue, a medical variation of the familiar household item super glue. The procedure has become the standard of care at Children’s for certain types of VMs. The team published a report about the technique in the journal Otolaryngology–Head and Neck Surgery.
Read about one of our patients who received this treatment.
Propranolol treatment of infantile hemangiomas
Infantile hemangiomas (IH) are the most common type of tumors among infants. Many of these tumors had to be removed with surgery. The best medical option for treatment was corticosteroids, which, aside from not being particularly effective, can cause difficult side effects. Perkins and his team have found using the blood pressure medication propranolol to be much more effective with no major side effects. This medication may be given orally to shrink or even eliminate these tumors without having surgery. By determining dosage and how to safely initiate treatment, the team helped develop a standard of care and use of propranolol as treatment for IH.
Now Perkins has teamed up with Dr. Mark Majesky to find out how propranolol works and why it helps some patients and not others. Using tissue samples from patients, the research team is comparing patients who have responded differently to the treatment. Information collected from this study will help us develop new and more effective treatments for hemangiomas, and provide better information for patients and families about what treatments are likely to work.
Learn more about this treatment in the 2011 Academic Annual Report.
Lymphatic malformation functional assessment instrument
Lymphatic malformations (LM) affect the lymphatic (body fluid) system. They happen when there is a problem in the formation of the tubes that carry body fluids (lymphatic vessels). As a result, fluids build up in the body's tissues and lymphatic vessels. When the buildup is close to the skin, you can easily see a lump. LMs come in all sizes and can happen anywhere on the body, but most are on the head or neck.
Our team has developed a survey tool to learn more about these malformations. We are now in the process of validating the effectiveness of this tool. Ultimately, this questionnaire will be used to assess the impact LM has on patients.
How you can participate
All head or neck LM patients, as well as their families, are able to participate in the survey. The questionnaire will be completed twice – once at enrollment and once again two weeks later. All parents fill out a parent assessment, and children over age of 11 may also fill out a self-assessment. Participants can complete the survey by paper form (during a clinic visit or by mail) or online. The survey takes about 10 minutes each time. Read more.
VAN Tissue Bank
Researchers working to understand and develop new treatment options rely on donated tissues for their investigations. Our research team collects tissue samples from both patients and their families to better understand VAN conditions. When patients go in for surgery, they are given the option to donate some of the tissue that would otherwise be discarded to our tissue bank. Tissue is collected from both VAN and non-VAN patients. We currently use these samples to learn more about lymphatic malformations and hemangiomas, and how certain medications reduce infantile hemangiomas.