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Scientists track rare genetic hearing loss over time

NCT ID NCT05572073

Knowledge-focused Sponsor: Akouos, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows up to 150 people with hearing loss caused by changes in the otoferlin gene. Researchers will measure hearing function using tests like auditory brainstem response (ABR) and otoacoustic emissions (OAE). The goal is to learn how this type of hearing loss changes over time, which can help design future treatments.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 150 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jul 2022

Expected to finish

Feb 2029

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Individuals with hearing loss due to confirmed otoferlin gene mutation(s)

Ages

Up to 44 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Clinical presentation of bilateral sensorineural hearing loss (SNHL), including auditory neuropathy (AN) / auditory neuropathy spectrum disorder (ANSD) phenotype or medical history of AN / ANSD phenotype earlier in life 2. Mutation(s) in the otoferlin gene 3. Able and willing to comply with all study requirements, as evidenced by successful completion of the informed consent (and assent, if applicable) process Additional Criteria for Inclusion in the Prospective Phase: 4. Presence of OAE / CM and absent / abnormal ABRs in at least one ear (that does not have a cochlear implant) within 12 months prior to or at the Month 0 visit Exclusion Criteria: 1. Unwillingness or inability of the potential participant and/or legally authorized representative to comply with all protocol requirements 2. Presence of cochlear nerve deficiency and/or cochlear nerve dysplasia Additional Criteria for Exclusion from the Prospective Phase: 3. Presence of bilateral cochlear implants at the time of record review or planned within the next 6 months 4. Presence of middle ear or auditory brainstem implant(s) at the time of record review or planned within the next 6 months 5. Any condition that would not allow the potential participant to complete follow-up assessments during the course of the study and/or, in the opinion of the Investigator, makes the potential participant unsuitable for the study Note: Potential participants will not be excluded based on their sex, gender, race, or ethnicity

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Conditions

The condition(s) this trial relates to.

auditory neuropathy autosomal recessive nonsyndromic hearing loss 9 Hearing Loss, Sensorineural sensorineural hearing loss disorder

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Sensorineural hearing loss, bilateral

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    9 sites in 6 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Ankara University

    RECRUITING

    Ankara, Turkey, 06230, Turkey (Türkiye)

  • Children's Hospital of Philadelphia

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

  • Cincinnati Children's Hospital Medical Center

    RECRUITING

    Cincinnati, Ohio, 45229, United States

  • Murdoch Children's Research Institute

    WITHDRAWN

    Parkville, Victoria, VIC 3052, Australia

  • National Taiwan University Hospital

    RECRUITING

    Taipei, 100, Taiwan

  • Sant Joan de Déu Barcelona Hospital

    RECRUITING

    Esplugues de Llobregat, Barcelona, 08950, Spain

  • University College London

    RECRUITING

    London, United Kingdom, NW1 2PG, United Kingdom

  • University Hospital in Tübingen

    RECRUITING

    Tübingen, 72076, Germany

  • University of Iowa

    RECRUITING

    Iowa City, Iowa, 52242, United States

  • Vanderbilt University Medical Center

    RECRUITING

    Nashville, Tennessee, 37232-8605, United States

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Other studies related to the condition(s) this trial covers.