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Looking for participantsPhase1/Phase2

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

Sponsor: Regeneron Pharmaceuticals

NCT ID: NCT05788536

View on ClinicalTrials.gov ↗

At a glance

What the study gets you
Access to the study treatment being tested
Type of study
Interventional (receives a drug or procedure)
Time in hospital
In-person visits at study sites — visit count not specified by the sponsor
Drug or intervention
DB-OTO (genetic)
How long the study runs
Study runs about 104 months (dates as stated)
About the drug or intervention
DB-OTO — genetic: Administered per the protocol
Patient visit burden
Not specified by the sponsor

In plain English

This study tests DB-OTO, a gene therapy, in infants, children, teenagers and adults whose hearing loss is caused by changes (mutations) in a gene called otoferlin (OTOF). DB-OTO uses a harmless virus (adeno-associated virus, or AAV) to deliver a working copy of the gene into the inner ear. The study is funded by Regeneron Pharmaceuticals.

Who can take part

  • Hearing loss caused by two faulty copies of the OTOF gene
  • Profound sensorineural hearing loss (over 90 decibels) diagnosed by the study doctor, based on hearing tests including auditory brainstem response (ABR)
  • Tests showing that the outer hair cells in the ear to be treated are working (otoacoustic emissions, or a cochlear microphonic test for those over 24 months)
  • Willingness to give consent (a parent or guardian for children), agree to genetic testing, and follow the childhood vaccination schedule where relevant
  • Able to have all the study checks needed
  • Normal enough blood test results at screening
  • No sign that hearing loss depends on body temperature
  • Those who can have children must use highly effective contraception and avoid pregnancy or fathering a child during the 48-week short-term follow-up period

Who may not be able to

  • Previous treatment with gene therapy
  • Ear anatomy that would make the planned surgery difficult or impossible (checked with CT or MRI scans)
  • Other permanent or untreatable causes of hearing loss
  • Current or past cancer
  • Current or past meningitis
  • A cochlear implant in the ear to be treated
  • Other risk factors for auditory neuropathy not caused by OTOF, such as prematurity, low birth weight, severe jaundice, neonatal intensive care unit (NICU) admission, or low Apgar scores

What taking part involves

  • • DB-OTO gene therapy is delivered by surgery into the inner ear (cochlea) of the ear(s) being treated
  • • Genetic testing to check hearing-loss-related genes
  • • Hearing tests and blood tests at screening
  • • Imaging scans (CT or MRI) to check the ear anatomy before treatment

Time commitment: Not fully stated — the short-term follow-up period lasts 48 weeks, and participants have screening tests (genetic, hearing, blood and scans) plus surgery to deliver the treatment; ask the trial team about the number and timing of visits and the full study duration.

Plain-English summary (AI-generated) from registry data. Not eligibility advice — only the trial team can confirm whether you can take part. Use the eligibility checker to see how your health profile matches this trial.

Type of study
Testing a treatment
Ages
Not specified
Who
All
Number of participants
36
Started
2023-06-27
Last checked
2026-08

Plain English Summary

What is this study?

  • • Testing a new treatment for congenital hearing loss secondary to biallelic mutations of the otoferlin gene (otof)
  • • Phase1/Phase2 - 36 participants
  • • Regeneron is conducting a study of an investigational new drug called DB-OTO

Who can take part?

  • • Adults
  • • Diagnosed with congenital hearing loss secondary to biallelic mutations of the otoferlin gene (otof)

Where?

  • • Cambridge - Addenbrooke's Hospital, Cambridge University Hospitals NHS FT
  • • London - Great Ormond Street Hospital For Children NHS Foundation Trust

This is a simplified summary. Always discuss with your doctor before making any decisions.

About This Trial

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 pediatric and adult participants who have severe-to profound and profound 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)

More detail

Former Sponsor Decibel Therapeutics

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

How this trial compares with your answers

Answer 2 more questions to improve match

What we know so far

Condition· Matched your search
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Gender· Tell us your sex for better matching

Still need:

  • • Tell us your age for better matching
  • • Tell us your sex for better matching

Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.

Eligibility at a Glance

Key info

  • Age: Not specified
  • Who can join: All genders

What the study is looking for

  • ✓Presence of biallelic, likely pathogenic or pathogenic OTOF variants
  • ✓No clinically significant laboratory findings on clinical laboratory tests at time of Screening as described in the...
  • ✓Audiological Criteria:
  • ✓Investigator diagnoses the participant with profound sensorineural hearing loss (SNHL; \>90 dB HL) based on...
  • ✓No evidence from measures of hearing loss that show a dependence on body temperature

Who cannot take part

  • ✗History of prior treatment with gene therapy
  • ✗History or presence of other permanent or untreatable hearing loss conditions
  • ✗Prior or current history of malignancies
  • ✗Prior or current history of meningitis
  • ✗History or presence of cochlear implants in the ear(s) to be infused with DB-OTO
See the full criteria
Key Inclusion Criteria: 1. Willingness to provide written informed consent (by at least one parent/legal guardian for pediatric participants, and with participant to provide assent, when applicable, or by the adult participant) and willingness to comply with trial protocol 2. Willingness to consent to genetic testing for the participant (by at least one parent/legal guardian for pediatric participants, and with participant to provide assent, when applicable, or by the adult participant) in order to evaluate a panel of hearing loss-related genes 3. Willingness to consent to vaccinations for the participant (by at least one parent/legal guardian for pediatric participants, and with participant to provide assent, when applicable, or by the adult participant) in accordance with the country-specific, age-appropriate immunization schedule, as described in the protocol 4. Participant able to perform all necessary assessments to qualify for enrollment and dosing in the corresponding cohort at the time the participant or parent/legal guardian signing the informed consent form (and participant providing assent, when applicable) 5. Presence of biallelic, likely pathogenic or pathogenic OTOF variants 6. No clinically significant laboratory findings on clinical laboratory tests at time of Screening as described in the protocol 7. Audiological Criteria: 1. Investigator diagnoses the participant 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 infused with DB-OTO. Alternatively, for participants \>24 months of age, outer hair cell presence can be confirmed via presence of the cochlear microphonic in the ear(s) to be infused with DB-OTO. 8. No evidence from measures of hearing loss that show a dependence on body temperature 9. From study start and for the duration of the short-term follow-up period (48 weeks): Female participants of childbearing potential and fertile males, must agree to use highly effective contraception. Female participants must agree not to become pregnant. Fertile male participants 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. Key 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 infused 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 infused 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 Note: Other protocol-defined inclusion/exclusion criteria apply

Where Is This Study? (2 UK sites)

Addenbrooke's Hospital, Cambridge University Hospitals NHS FT

Cambridge CB2 0QQ, United Kingdom

Recruiting
Site contact (verified)
Manohar Bancemlb59@cam.ac.uk

Great Ormond Street Hospital For Children NHS Foundation Trust

London WC1N 3JH, United Kingdom

Recruiting
Site contact (verified)
Robert Nashr.nash@ucl.ac.uk

How to Get in Touch

Clinical Trials Administrator

Sponsor contact

CONTACT

844-734-6643 clinicaltrials@regeneron.com
Data sourced from ClinicalTrials.gov · Last verified: 2026-08