Study of Olfactory Neuroblastoma in Children and Adults to Understand Disease Course and Treatment Response

What this Trial Is About

Olfactory neuroblastoma ONB is a rare cancer that develops from tissue in the upper part of the nasal cavity related to the sense of smell. It affects both children and adults, though pediatric cases are especially rare. This research aims to better understand the course of ONB, including tumor features, disease progression, responses to treatment, and patient outcomes over time. Participants with confirmed ONB aged 3 years and older will be enrolled. The study involves reviewing medical history and imaging scans of tumor sites. Blood and tumor samples will be collected when possible. Participants may also provide leftover tissue from biopsies or surgeries. The study team will monitor disease progression, treatment responses, and patient-reported outcomes throughout the course of the disease. Participants do not need to visit the study site. They will complete surveys about their physical and emotional wellbeing and may undergo smell and taste tests, physical exams, and various sample collections including blood, saliva, urine, and nasal secretions. Imaging scans and tumor biopsies may also be performed. Medical records and samples may be reviewed and collected every 12 months, with participants followed for the rest of their lives to better understand ONBs natural history.

A Natural History Study of Children and Adults With Olfactory Neuroblastoma