Understanding the natural history of olfactory neuroblastoma in patients
Official title: A Natural History Study of Children and Adults With Olfactory Neuroblastoma
Run by National Institutes of Health Clinical Center (CC) · NCT04755205 · Data updated 2026-11-12
This study is trying to learn more about olfactory neuroblastoma, a rare cancer in the nose, by gathering information on how it develops and affects patients to improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 3 Years to 120 Years |
| Sex | All |
| Enrollment | 525 (estimated) |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Drugs / interventions | radiation |
| Locations | 1 site (Bethesda, Maryland) |
| Status | Recruiting |
| Started | June 2, 2022 |
| Main results expected | December 31, 2029 |
| Study ends | December 31, 2029 |
| Registry record updated | October 16, 2026 |
| Trial ID | NCT04755205 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals aged 3 years and older with histologically documented olfactory neuroblastoma.
✕Probably not a fit
Patients who are pregnant or unable to provide informed consent may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to gather comprehensive data on olfactory neuroblastoma (ONB), a rare cancer affecting the nasal cavity. Researchers will evaluate the disease's progression, tumor characteristics, treatment responses, and management strategies through medical history reviews, blood samples, and surveys assessing patients' emotional and physical well-being. Participants will also undergo smell tests to assess their olfactory function. The study will collect clinical, epidemiologic, and biological data to enhance understanding and treatment of ONB.
Why it matters
Potential benefit: If successful, this study could lead to improved treatment strategies and supportive care for patients with olfactory neuroblastoma.
How similar studies have gone: While ONB is rare, similar observational studies in rare tumors have provided valuable insights, suggesting potential for success in this approach.
Who can join: the full rules
Show full inclusion / exclusion criteria
* INCLUSION CRITERIA:. * Subjects with histologically documented olfactory neuroblastoma. * Age \>= 3 years old. * Ability of subject to understand and the willingness to sign a written consent document EXCLUSION CRITERIA: Pregnant women are excluded from this study because of more than minimal risk activities (imaging studies with contrast, biopsies) pertaining to enrollment.
Where it's running
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National Institutes of Health Clinical Center
Bethesda, Maryland, United States Recruiting
Study contacts
- Principal investigator: Charalampos Floudas, M.D. — National Cancer Institute (NCI)
- Study coordinator: Marissa B Mallek, R.N.
- Email: marissa.mallek@nih.gov
- Phone: (240) 760-7498
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.