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North American Pediatric Neuroendocrine Tumor Registry

About the North American Pediatric Neuroendocrine Tumor Registry

Neuroendocrine tumors (NET) arise from cells which have characteristics of both endocrine cells and nerve cells. These cells are distributed throughout the body, and therefore neuroendocrine tumors can arise in different organs in the body. NETs are extremely rare in children and young adults with an incidence rate of 2.8 per million per year. Although majority are sporadic, NETs can be associated with familial syndromes such as multiple endocrine neoplasia (MEN) type 1 and 2, neurofibromatosis (NF-1), Von Hippel Lindau (VHL) and tuberous sclerosis complex (TSC).

Often the symptoms of neuroendocrine tumors are nonspecific and there can be a significant delay in diagnosis. Therefore, these patients may be treated by multiple medical specialists. There are no consensus guidelines for treatment of NETs in children, and most physicians follow adult guidelines. The North American Pediatric Neuroendocrine Registry was established to optimize the diagnosis and treatment of neuroendocrine tumors in children.

Types of neuroendocrine tumors

  • Neuroendocrine tumor of appendix (carcinoid of the appendix)
  • Bronchial carcinoid
  • Pancreatic neuroendocrine tumor
  • Pheochromocytoma
  • Paraganglioma
  • High grade neuroendocrine carcinoma

Registry goals

To enroll all children diagnosed with neuroendocrine tumor 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 neuroendocrine tumor.

To serve as a resource for researchers involved in pediatric neuroendocrine research.

How to enroll

If you or your child is diagnosed with a neuroendocrine 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, Pediatric Oncologist
Hao Wu, MD, PhD, Pediatric Pathologist
Sanjeev Vasudevan, MD, Surgical Oncologist
Priya Mahajan, MD, Pediatric Oncologist