NCT06303180

Brief Summary

Background: Many disorders of the head and neck can affect a person s hearing; balance; smell; taste; swallowing; voice; or speech. These disorders include cancers and genetic and inflammatory diseases. To find better ways to diagnose and treat these disorders, researchers need to study tissues and other biological samples from people who have them. Objective: To collect biological samples for a repository that will be used for research. Eligibility: People of any age with a disorder of the head and neck that requires the taking of biological samples. The conditions may be any that affect hearing; balance; smell; taste; swallowing; voice; or speech. Design: Part 1: Participants will give permission for their leftover tissue samples to be used for research. These are tissue samples from the head and neck that were collected in the course of routine tests and care or other research studies. Information on each participant s age, diagnosis, and previous treatments will also be collected. Part 2: Some participants may be asked for more samples. All those aged 3 years or older will have a physical exam. They will provide blood and saliva samples. A cotton swab or brush will be used to collect cells from the inside of the cheek. Participants 18 years or older may have additional tests. They may provide nasal secretions: A piece of gelfoam or a sponge will be placed in the nose to soak up secretions for 5 to 10 minutes. They may have biopsies: Small samples of tissue will be cut from the skin and the tissue lining the mouth. Samples may be used for genetic testing.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
1,000

participants targeted

Target at P75+ for all trials

Timeline
94mo left

Started Mar 2024

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress22%
Mar 2024Dec 2033

Study Start

First participant enrolled

March 4, 2024

Completed
4 days until next milestone

First Submitted

Initial submission to the registry

March 8, 2024

Completed
4 days until next milestone

First Posted

Study publicly available on registry

March 12, 2024

Completed
9.8 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 30, 2033

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

December 30, 2033

Last Updated

November 14, 2025

Status Verified

November 12, 2025

Enrollment Period

9.8 years

First QC Date

March 8, 2024

Last Update Submit

November 13, 2025

Conditions

Keywords

HearingBalanceSpeechTasteSMELLTissue SampleGenomic DNASaliva

Outcome Measures

Primary Outcomes (1)

  • To create a biorepository of diseased and normal tissue specimens for research purposes.

    (Part 1) From surgical waste materials from participants of all ages in NIH protocols who have head and neck disorders.(Part 2) Participants aged 3 and older may have collection of blood, saliva, and/or oral swabs. Participants aged 18 and older, may undergo oral mucosal biopsies and skin biopsies and nasal secretion collection, taken from subjects with head and neck disorders.

    Ongoing

Secondary Outcomes (1)

  • To share specimens with the NCI Frederick Patient-Derived Xenograft (PDX) team, other approved protocols or may be used under this protocol to conduct analysis of cellular, molecular, genetic and genomic biology of

    Ongoing

Study Arms (1)

1

Patients with head and neck conditions affecting hearing, balance, smell, taste, swallowing, voice and speech.

Eligibility Criteria

Age3 Years - 99 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

1000 subjects of any age, any race, ethnicity and gender. Only viable neonates will be enrolled. We are hoping to accrue about 100 subjects a year over 10 years. NIH employees and staff participating in an approved NIH protocol. There will be no collection or recruitment of healthy volunteers.

You may qualify if:

  • In order to be eligible to participate in this study, an individual must meet all of the following criteria:
  • Ability to provide their own consent, or for minors, a parent or guardian is able to consent on their behalf.
  • Ability of subject (or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document.
  • Have a hearing, balance, smell, taste, voice, speech or language condition for which the subject is under clinical care or research purposes under a separate Review Board (IRB) approved protocol; OR be a healthy volunteer aged at least 3 years, enrolled on an approved research protocol.

You may not qualify if:

  • An individual who meets any of the following criteria will be excluded from participation in this study:
  • Have active symptomatic major organ disorders that would increase the risk of biopsy for research, including but not limited to bleeding disorders, ischemic heart disease, a recent myocardial infarction, active congestive heart failure or severe pulmonary dysfunction
  • Have specific medical condition, such as a bleeding tendency where additional biopsies or phlebotomy procedures may increase the subjects risk in participating. This will be determined at the discretion of the principal investigator.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

National Institutes of Health Clinical Center

Bethesda, Maryland, 20892, United States

RECRUITING

Related Links

MeSH Terms

Conditions

Hearing LossHead and Neck NeoplasmsHearing DisordersLaryngeal DiseasesSpeech

Condition Hierarchy (Ancestors)

Ear DiseasesOtorhinolaryngologic DiseasesSensation DisordersNeurologic ManifestationsNervous System DiseasesSigns and SymptomsPathological Conditions, Signs and SymptomsNeoplasms by SiteNeoplasmsRespiratory Tract DiseasesVerbal BehaviorCommunicationBehavior

Study Officials

  • Joshua M Levy, M.D.

    National Institute on Deafness and Other Communication Disorders (NIDCD)

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Joshua M Levy, M.D.

CONTACT

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
NIH
Responsible Party
SPONSOR

Study Record Dates

First Submitted

March 8, 2024

First Posted

March 12, 2024

Study Start

March 4, 2024

Primary Completion (Estimated)

December 30, 2033

Study Completion (Estimated)

December 30, 2033

Last Updated

November 14, 2025

Record last verified: 2025-11-12

Locations