Actively Recruiting
A Natural History Study of Children and Adults With Olfactory Neuroblastoma
Led by National Cancer Institute (NCI) · Updated on 2026-06-01
525
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Olfactory neuroblastoma (ONB) is a rare cancer that develops in the upper part of the nasal cavity, affecting the sense of smell. This research aims to better understand the disease's course, tumor characteristics, treatment responses, and management. The study focuses on both children and adults diagnosed with ONB to gather important information for future treatment and care improvements. Participants with confirmed ONB will be enrolled to characterize the natural history of the disease. The study includes comprehensive evaluations such as medical history reviews and imaging of tumor sites. Blood and tumor samples may be collected at the start and throughout the study. Participants will be followed over time to observe disease progression, response to therapies, and patient-reported outcomes. During the study, participants may provide various samples like blood, saliva, urine, and nasal secretions. They will complete surveys on their emotional and physical wellbeing and undergo smell and taste tests. Medical records and leftover surgical tissue may also be reviewed. Follow-up occurs every 12 months with ongoing monitoring for the rest of the participant's life. The main outcome is to understand the natural history of ONB over the duration of the study.
CONDITIONS
Brief Title
A Natural History Study of Children and Adults With Olfactory Neuroblastoma
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Subjects with histologically documented olfactory neuroblastoma.
- Age 3 years or older.
- Ability to understand and willingness to sign a written consent document.
You will not qualify if you...
- Pregnant women are excluded due to risks from imaging studies and biopsies involved in the study.
AI-Screening
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Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 1 month
Participants undergo a comprehensive study entry evaluation including imaging of tumor sites and collection of medical histories.
1 baseline visit (in-person)
Duration - Duration of study up to December 2029
Participants are followed throughout the course of their disease to document disease progression, response to therapies, recurrence, and survival. Specimens may be obtained longitudinally when feasible.
Periodic visits depending on disease status and treatment
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
M
Marissa B Mallek, R.N.
C
Charalampos Floudas, M.D.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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