Actively Recruiting
Natural History of Autosomal Dominant Hearing Loss
Led by National Institute on Deafness and Other Communication Disorders (NIDCD) · Updated on 2026-05-07
1100
Participants Needed
1
Research Sites
445 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Background: Hereditary hearing loss is one of the most common sensory disabilities affecting newborns. The main options for people with hereditary hearing loss are hearing aids and cochlear implants. Both options have their limitations and do not restore biological hearing. Researchers want to learn if gene editing might be a treatment option. Objective: To understand the genes that cause non-syndromic autosomal dominant hearing loss (DFNA) in people with DFNA as well as their family members. Eligibility: People age 3 99 who have DFNA, affected family members of enrolled participants with DFNA, and unaffected family members of enrolled participants Design: Participants will be screened with a medical and hearing history. Their medical records will be reviewed. Participants will have hearing tests. They will wear headphones or earplugs. They will listen to tones, sounds, and words and may be asked to describe what they hear. Participants will have balance tests. For these, they will wear googles as they watch moving lights or as cold or warm air is blown into their ears. They will sit in a spinning chair in a quiet, dark booth. From a reclined position, they will raise their head while listening to clicking sounds. Participants will have blood drawn through a needle in the arm. Some blood will be used for gene testing. Some participants will have 2 skin biopsies. The skin will be washed, and a numbing medicine will be injected. Two small pieces of skin will be removed. Participants may have a physical exam. Participation will last for up to 20 years. Participants may give medical updates once a year.
CONDITIONS
Official Title
Natural History of Autosomal Dominant Hearing Loss
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Affected persons with autosomal dominant hereditary sensorineural hearing loss, preferably confirmed by prior genetic testing
- Affected family members of enrolled participants with known autosomal dominant hereditary hearing loss
- Unaffected family members (healthy volunteers) of enrolled participants
- Adults must be able to provide informed consent
- Minors must have a parent or guardian able to provide informed consent
- Subjects must be 3 to 99 years of age
You will not qualify if you...
- Persons with sensorineural hearing loss or peripheral vestibular dysfunction caused by non-genetic factors such as infection, metabolic or immunologic disorders, or exposure to ototoxic agents like cisplatin or aminoglycoside antibiotics
- Persons with sensorineural hearing loss associated with surgical interventions such as acoustic neuroma removal or failed stapedectomy
- Individuals who are cognitively impaired and lack the capacity to consent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
Research Team
M
Marcia L Mulquin, R.N.
CONTACT
J
Joshua M Levy, M.D.
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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