A Study of DB-OTO, an Adeno-Associated Virus (AAV) Based Gene Therapy, in Children/Infants With Hearing Loss Due to Otoferlin Mutations

NCT ID: NCT05788536

Last Updated: 2025-10-10

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

PHASE1/PHASE2

Total Enrollment

30 participants

Study Classification

INTERVENTIONAL

Study Start Date

2023-06-27

Study Completion Date

2031-04-19

Brief Summary

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Regeneron is conducting a study of an investigational new drug called DB-OTO. DB-OTO is a gene therapy that is being developed to treat children who have hearing loss due to changes in the otoferlin gene.

The purpose of this study is to:

* Learn about the safety of DB-OTO
* Determine how well DB-OTO is tolerated (does not cause ongoing discomfort)
* Evaluate the efficacy of DB-OTO (how well DB-OTO works)

Detailed Description

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Former Sponsor Decibel Therapeutics

Conditions

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Congenital Hearing Loss Secondary to Biallelic Mutations of the Otoferlin Gene (OTOF)

Study Design

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Allocation Method

NON_RANDOMIZED

Intervention Model

SEQUENTIAL

DB-OTO will be administered as a single intracochlear injection into one (Part A) or both ears (Part B). For bilateral injections (Part B), patients will receive DB-OTO in 1 surgical session.
Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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DB-OTO - Unilateral Dose Escalation

Part A: Unilateral intracochlear dosing

Group Type EXPERIMENTAL

DB-OTO

Intervention Type GENETIC

DB-OTO will be administered as a single intracochlear injection into one ear (Part A).

* LD Cohort (lower dose)
* HD Cohort (high dose) - not implemented

DB-OTO - Bilateral Dose Expansion

Part B: Bilateral intracochlear dosing using the dose selected based on safety and efficacy data from Part A.

Group Type EXPERIMENTAL

DB-OTO

Intervention Type GENETIC

DB-OTO will be administered as a single intracochlear injection into both ears (Part B). For bilateral injections (Part B), patients will receive DB-OTO in 1 surgical session.

Interventions

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DB-OTO

DB-OTO will be administered as a single intracochlear injection into one ear (Part A).

* LD Cohort (lower dose)
* HD Cohort (high dose) - not implemented

Intervention Type GENETIC

DB-OTO

DB-OTO will be administered as a single intracochlear injection into both ears (Part B). For bilateral injections (Part B), patients will receive DB-OTO in 1 surgical session.

Intervention Type GENETIC

Eligibility Criteria

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Inclusion Criteria

1. Willingness of at least 1 parent/legal guardian to provide written informed consent (and patient to provide assent, when applicable) and willingness to comply with trial protocol; to consent to genetic testing for the patient (and patient to provide assent, when applicable) in order to evaluate a panel of hearing loss-related genes; and to consent to vaccinations for the patient (and patient to provide assent, when applicable) in accordance with the country-specific pediatric immunization schedule as described in the protocol
2. Patient is aged \<18 years and able to perform all necessary assessments to qualify for enrollment and dosing in the corresponding cohort at the time the parent/legal guardian signing the informed consent form (and patient providing assent, when applicable)
3. Presence of biallelic, likely pathogenic or pathogenic OTOF variants
4. No clinically significant laboratory findings on clinical laboratory tests at time of Screening as described in the protocol
5. Audiological Criteria:

1. Investigator diagnoses the patient with profound sensorineural hearing loss (SNHL; ≥90 dB HL) based on behavioral and physiologic measurements (ABR) of inner ear function
2. Outer hair cell presence is confirmed via presence of otoacoustic emissions (≥6 dBSNR) at ≥3 frequencies from 1 to 8 kHz in the ear(s) to be injected with DB-OTO. Alternatively, for children \>24 months to \<18 years of age, outer hair cell presence can be confirmed via presence of the cochlear microphonic in the ear(s) to be injected with DB-OTO.
6. No evidence from measures of hearing loss that show a dependence on body temperature
7. From study start and for the duration of the short-term follow-up period (48 weeks): Female patients of childbearing potential and fertile males, must agree to use highly effective contraception. Female patients must agree not to become pregnant. Fertile male patients must agree not to father a child or donate sperm, for 48 weeks and in cases of early withdrawal, for at least 12 months after DB-OTO administration.

Exclusion Criteria

1. History of prior treatment with gene therapy
2. Surgical anatomy that would preclude or meaningfully impact the planned surgical approach as indicated by medical imaging (eg, computed tomography \[CT\] or magnetic resonance imaging \[MRI\]) in the ear(s) to be injected with DB-OTO
3. History or presence of other permanent or untreatable hearing loss conditions
4. Prior or current history of malignancies
5. Prior or current history of meningitis
6. History or presence of cochlear implants in the ear(s) to be injected with DB-OTO
7. History of risk factor(s) for auditory neuropathy not caused by OTOF pathogenic variants including but not limited to: prematurity, low birth weight, hyperbilirubinemia, neonatal intensive care unit (NICU) admission, and/or low Apgar scores as described in the protocol
Maximum Eligible Age

17 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Regeneron Pharmaceuticals

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Clinical Trial Management

Role: STUDY_DIRECTOR

Regeneron Pharmaceuticals

Locations

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University of California Los Angeles Medical Center

Los Angeles, California, United States

Site Status RECRUITING

Rady Children's Hospital

San Diego, California, United States

Site Status RECRUITING

Nemours Children s Clinic

Jacksonville, Florida, United States

Site Status RECRUITING

Nemours Childrens Hospital

Orlando, Florida, United States

Site Status RECRUITING

Boston Children's Hospital - Main

Boston, Massachusetts, United States

Site Status RECRUITING

Columbia University Irving Medical Center

New York, New York, United States

Site Status RECRUITING

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status RECRUITING

Seattle Children's Hospital

Seattle, Washington, United States

Site Status RECRUITING

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status RECRUITING

University Hospital Tubingen

Tübingen, , Germany

Site Status RECRUITING

Hospital Universitario Materno Infantil en las Palmas de Gran Canaria

Las Palmas de Gran Canaria, , Spain

Site Status WITHDRAWN

Ramon y Cajal University Hospital

Madrid, , Spain

Site Status RECRUITING

Clinica Universidad de Navarra- Pamplona

Pamplona, , Spain

Site Status RECRUITING

Addenbrooke's Hospital, Cambridge University Hospitals NHS FT

Cambridge, , United Kingdom

Site Status RECRUITING

Great Ormond Street Hospital For Children NHS Foundation Trust

London, , United Kingdom

Site Status RECRUITING

Countries

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United States Germany Spain United Kingdom

Central Contacts

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Clinical Trials Administrator

Role: CONTACT

844-734-6643

Facility Contacts

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Akira Ishiyama

Role: primary

Daniela Carvalho

Role: primary

Evie Landry

Role: primary

Cedric Pritchett

Role: primary

Eliot Shearer

Role: primary

Lawrence Lustig

Role: primary

John Greinwald, Jr.

Role: primary

Jay Rubenstein

Role: primary

Charlotte Klis

Role: primary

Hubert Lowenheim

Role: primary

Ruben Polo

Role: primary

Manuel Jesus Manrique Rodriguez

Role: primary

Manohar Bance

Role: primary

Robert Nash

Role: primary

References

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Valayannopoulos V, Bance M, Carvalho DS, Greinwald JH Jr, Harvey SA, Ishiyama A, Landry EC, Lowenheim H, Lustig LR, Manrique M, Nash R, Polo R, Pritchett CV, Rubinstein JT, Shearer AE, Del Castillo I, Anderson JJ, Corrales CE, Quigley TM, Riggs WJ, Weber P, Wilson G, Irvin SC, Hassan HE, Chen Y, Liu R, Drummond MC, Sabin LR, Musser BJ, Yancopoulos GD, Kyratsous CA, Herman GA, Baras A, Whitton JP; CHORD Study Group. DB-OTO Gene Therapy for Inherited Deafness. N Engl J Med. 2025 Oct 12. doi: 10.1056/NEJMoa2400521. Online ahead of print.

Reference Type DERIVED
PMID: 41085057 (View on PubMed)

Related Links

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https://portal.sanogenetics.com/study/genetic-hearing-loss-trials

Patients, Caregivers \& HCPs: Contribute to Genetic Hearing Loss Research

Other Identifiers

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2022-000079-38

Identifier Type: EUDRACT_NUMBER

Identifier Source: secondary_id

2024-511342-40-00

Identifier Type: CTIS

Identifier Source: secondary_id

DB-OTO-001

Identifier Type: -

Identifier Source: org_study_id

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