Neural crest
Tumors of neural crest origin develop in approximately 40% of patients. These are typically ganglioneuromas or ganglioneuroblastomas. Neural crest tumors have the ability to form in multiple organs tissues throughout the body, typically in the chest or abdomen. It is therefore important for ROHHAD patients to have regular MRI and CT scans to screen for tumor growth. It is believed that these tumors do not significantly affect the prognosis for ROHHAD patients. Neuroendocrine tumors can arise 7–16 years after the initial onset of symptoms, therefore the name ROHHADNET (which includes these tumors) has not been widely accepted as it is believed this name would lead to further misdiagnosis. Treatment for these neuroendocrine tumors requires surgical removal, typically performed by a pediatric oncologist.