North American Inflammatory Myofibroblastic Tumor Registry

Inflammatory myofibroblastic tumor (IMT) is a rare tumor that occurs primarily in children and young adults. Most common sites are lung and abdomen. In some patients, it is accompanied by symptoms such as fever, malaise and weight loss. Complete surgical excision is the treatment of choice. In patients with unresectable or metastatic tumors, non-steroidal anti-inflammatory drugs (NASIDs) and chemotherapy have been used in the past. Recent molecular diagnostic techniques have led to identification of genetic abnormalities in tumor tissue such as ALK gene rearrangement and ROS1 gene fusions in more than 90% of children with IMT. Novel therapeutic agents targeting these genetic abnormalities such as crizotinib have shown promising activity against IMTs. 

In spite of these developments, several questions remain about the optimal treatment of IMTs in children.

  • What is the role of newer targeted agents and how do we use them?
  • How do we treat children who do not respond to the targeted agents and children whose tumors do not have genetic changes that can be targeted?
  • How do we undertake surveillance for tumor recurrence?

Registry goals

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

How to enroll

If you or your child is diagnosed with inflammatory myofibroblastic tumor 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

Rajkumar Venkatramani, MD, MS, MBA, Pediatric oncologist
Priya Mahajan, MD, Pediatric oncologist
Josalind Randall, Research Coordinator

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