North American Pediatric Angiosarcoma Registry

Angiosarcoma is a rare tumor of the endothelial (blood vessel) cells encountered mostly in adults (2 cases per million people per year). In children, it is extremely rare, and may arise on the skin or in different organs of the body. In some cases, angiosarcoma may arise from previously existing hemangioma. It is a very aggressive tumor, and can spread rapidly to lungs and liver. With the current treatment regimens, the prognosis for patients with angiosarcoma, both children and adults, is very poor. The two other vascular cancers, lymphangiosarcoma and epithelioid hemangioendothelioma, have an even lower incidence.

Often the symptoms of vascular cancers are nonspecific, and are related to the location of the tumor. The accurate diagnosis of these tumors by microscopic evaluation of a tumor biopsy may be difficult even for an experienced pathologist. Therefore, by the time the condition is identified, the tumor may have widely spread, and challenging to cure. There are no consensus guidelines for treatment of vascular cancers in children, and most physicians follow adult protocols. The North American Pediatric Angiosarcoma Registry was established to optimize the diagnosis and treatment of vascular cancers in children.

Types of vascular cancers in children

• Angiosarcoma
• Lymphangiosarcoma
• Epithelioid hemangioendothelioma (EHE)

Registry goals

• To enroll all children diagnosed with vascular cancers in North America and collect clinical and biological information.
• To serve as a resource for patients, their families, and treating physicians to ensure optimal treatment of children with vascular cancers.
• To serve as a resource for researchers involved in pediatric vascular cancer research.

Why to enroll

Vascular cancers are very rare and most institutions may treat 1-2 patients every 5 years. There is minimal information about vascular cancers in children, and no guidelines for treatment or early detection. The registry is collecting clinical data and biological samples from current patients and survivors with vascular cancer diagnosed during childhood. Together, the information may allow a better understanding of these aggressive tumors, what therapies are more effective, and the risk factors and the predictors of recurrence and progression.

How to enroll

If you or your child is diagnosed with a vascular cancer, and you are interested in finding more information about this registry, please contact us by emailing raretumors@texaschildrens.org or by calling 832-824-6835.

Registry personnel

Ionela Iacobas, MD, Pediatric Oncologist
Rajkumar Venkatramani, MD, MS, MBA, Pediatric Oncologist
Priya Mahajan, MD, Pediatric Oncologist
Josalind Randall, Research Coordinator