Clinical trial Recruiting at 1 site Observational Ages 3 to 120

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.

More Esthesioneuroblastoma trials

Quick facts

Study typeObservational
Ages3 Years to 120 Years
SexAll
Enrollment525 (estimated)
SponsorNational Institutes of Health Clinical Center (CC)
NIH
Drugs / interventionsradiation
Locations1 site (Bethesda, Maryland)
StatusRecruiting
StartedJune 2, 2022
Main results expectedDecember 31, 2029
Study endsDecember 31, 2029
Registry record updatedOctober 16, 2026
Trial IDNCT04755205 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

  • 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.