Understanding the natural history of olfactory neuroblastoma in patients

A Natural History Study of Children and Adults With Olfactory Neuroblastoma

Observational National Institutes of Health Clinical Center (CC) · NCT04755205

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 typeObservational
Enrollment525 (estimated)
Ages3 Years to 120 Years
SexAll
SponsorNational Institutes of Health Clinical Center (CC) NIH
Drugs / interventionsradiation
Locations1 site (Bethesda, Maryland)
Trial IDNCT04755205 on ClinicalTrials.gov

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.

Who should consider this trial

Good fit: Ideal candidates include individuals aged 3 years and older with histologically documented olfactory neuroblastoma.

Not a fit: Patients who are pregnant or unable to provide informed consent may not benefit from this study.

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 performed: While ONB is rare, similar observational studies in rare tumors have provided valuable insights, suggesting potential for success in this approach.

Eligibility criteria

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 this trial is running

Bethesda, Maryland

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Olfactory NeuroblastomaEsthesioneuroblastomaesthesioneuroblastomanasal cavity tumorpediatric onbadult onbNatural History
Last reviewed 2026-06-13 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.