Important: This page is general information, not medical advice. It does not recommend or prescribe any treatment. Always consult your doctor or pharmacist before starting, stopping or changing any medicine.
About Usher Syndrome
Usher syndrome is an inherited disease that causes serious hearing loss and retinitis pigmentosa, an eye disorder that causes your vision to get worse over time. It is the most common condition that affects both hearing and vision.
There are three types of Usher syndrome:
- People with type I are deaf from birth and have severe balance problems from a young age. Vision problems usually start by age 10 and lead to blindness.
- People with type II have moderate to severe hearing loss and normal balance. Vision problems start in the early teens and get worse more slowly than in type I.
- People with type III are born with normal hearing and near-normal balance but develop vision problems and then hearing loss.
There is no cure. Tools such as hearing aids or cochlear implants can help some people. Training such as Braille instruction, low-vision services, or auditory training can also help.
It sits within Eyes and Vision, Ear, Nose and Throat and Genetics/Birth Defects.
The lead U.S. institute for this subject is the National Eye Institute.
When to speak to someone. Reading about a topic cannot tell you whether it applies to you. Speak to a doctor or pharmacist if symptoms are severe, sudden, getting worse, or simply not going away — and seek emergency care immediately for chest pain, breathing difficulty, sudden weakness or confusion, or a serious allergic reaction.
Research on Usher Syndrome
39 studies areregistered for this condition on ClinicalTrials.gov, the U.S. National Library of Medicine's public registry. A selection is below — the links go straight to the registry entry, not to a summary of ours.
What a registered study does and does not mean. Registration means a study exists and has been declared publicly. It says nothing about whether the treatment being tested works, is safe, or is available to you. Many studies find no benefit — that is what research is for. Never seek out an experimental treatment on the strength of a registry entry alone.
Research currently under way
- Rate of Progression in USH2A-related Retinal DegenerationJaeb Center for Health Research
- A 24-Month Trial of NPI-001 for the Preservation of Photoreceptors in Retinitis Pigmentosa Associated With Usher SyndromeNacuity Pharmaceuticals, Inc.
- Genetic Analyses of Nonsyndromic and Syndromic Deafness in PakistanNational Institute on Deafness and Other Communication Disorders (NIDCD)
- Study to Evaluate Ultevursen in Subjects With Retinitis Pigmentosa (RP) Due to Mutations in Exon 13 of the USH2A GeneLaboratoires Thea
- A Study to Investigate the Safety of OpCT-001 in Adults Who Have Primary Photoreceptor Disease (CLARICO)BlueRock Therapeutics
- Early Check: Expanded Screening in NewbornsRTI International
Research already completed
- Safety and Efficacy of NPI-001 Tablets for RP Associated With Usher SyndromeNacuity Pharmaceuticals, Inc.
- Auditory Neural Function in Implanted Patients With Usher SyndromeOhio State University
- Natural History Study in Subjects With Usher SyndromeFondazione Telethon
Study data from ClinicalTrials.gov, a service of the U.S. National Library of Medicine. Retrieved 2026-07-30. Registry entries are supplied by study sponsors and investigators; ClinicalTrials.gov does not verify their scientific validity. PocketsInfo is not affiliated with, and not endorsed by, the NLM or the NIH.
Where to read more
Rather than paraphrase, we point you to the primary sources. Every link below is to a government health agency, a national institute or a recognised medical body — grouped by what you are trying to find out.
Learn More
- Retinitis PigmentosaFoundation Fighting Blindness
- Usher SyndromeGenetic and Rare Diseases Information Center
- Usher SyndromeNational Eye Institute
- Usher SyndromeNational Institute on Deafness and Other Communication Disorders
Clinical Trials
- ClinicalTrials.gov: Usher SyndromesNational Institutes of Health
Medical subject headings
Clinicians and researchers index this subject under Usher Syndromes. These are the terms to use when searching medical literature.
This page is built from the MedlinePlus health topic record for Usher Syndrome, a service of the U.S. National Library of Medicine (NLM), National Institutes of Health. Information is from MedlinePlus.gov. PocketsInfo is not affiliated with, and is not endorsed by, the NLM or the NIH. Retrieved 30 July 2026.