Overview
Iridocorneal endothelial syndrome, often called ICE syndrome, is a rare eye condition that affects the inner layer of the cornea (the clear front part of the eye). In ICE syndrome, the cells lining the back of the cornea behave abnormally — they grow where they should not, spreading across the drainage channels of the eye and onto the iris (the colored part of the eye). This causes a chain of problems including increased eye pressure, changes to the shape and appearance of the iris, and damage to the optic nerve over time. ICE syndrome actually includes three closely related conditions: Chandler syndrome, progressive iris atrophy, and Cogan-Reese syndrome (also called iris nevus syndrome). Each has slightly different features, but they all share the same underlying problem with abnormal corneal cells. The condition almost always affects only one eye and is not passed down through families. The most common symptoms are blurred vision, seeing halos around lights, eye pain, and noticeable changes in how the iris looks. Over time, the rising eye pressure can lead to glaucoma, which can permanently damage vision if not treated. There is no cure for ICE syndrome, but treatments like eye drops, laser therapy, and surgery can help manage eye pressure and protect vision. Most people with ICE syndrome need long-term monitoring and care from an eye specialist.
Also known as:
Key symptoms:
Blurred or hazy visionSeeing halos or glare around lights, especially at nightEye pain or discomfortIncreased pressure inside the eye (glaucoma)Changes in the shape or appearance of the irisThe pupil looking distorted or off-centerSmall bumps or nodules on the surface of the irisSwelling or cloudiness of the corneaGradual loss of peripheral (side) visionSensitivity to light
Clinical phenotype terms (16)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
4 eventsArizona State University — NA
Dongzhimen Hospital, Beijing — PHASE1, PHASE2
Lund University
San Francisco Department of Public Health — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Iridocorneal endothelial syndrome.
View clinical trials →Clinical Trials
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Iridocorneal endothelial syndrome.
Community
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Start the conversation →Latest news about Iridocorneal endothelial syndrome
Disease timeline:
New recruiting trial: Epidemiology of Injuries in the Professional Women's Swedish National IceHockey League Permitted to Body-Checking
A new clinical trial is recruiting patients for Iridocorneal endothelial syndrome
New recruiting trial: PrEP Intervention for People Who Inject Substances and Use Methamphetamine
A new clinical trial is recruiting patients for Iridocorneal endothelial syndrome
Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which type of ICE syndrome do I have — Chandler syndrome, progressive iris atrophy, or Cogan-Reese syndrome — and does it change my treatment?,How often do I need to come in for monitoring, and what tests will you do each visit?,What eye pressure level are we aiming for, and how will we know if my current treatment is working?,At what point would you recommend surgery, and what type would be best for me?,Is there any risk that my other eye will be affected?,Are there any activities or lifestyle changes I should make to protect my vision?,What signs should prompt me to call you or go to the emergency room right away?
Common questions about Iridocorneal endothelial syndrome
What is Iridocorneal endothelial syndrome?
Iridocorneal endothelial syndrome, often called ICE syndrome, is a rare eye condition that affects the inner layer of the cornea (the clear front part of the eye). In ICE syndrome, the cells lining the back of the cornea behave abnormally — they grow where they should not, spreading across the drainage channels of the eye and onto the iris (the colored part of the eye). This causes a chain of problems including increased eye pressure, changes to the shape and appearance of the iris, and damage to the optic nerve over time. ICE syndrome actually includes three closely related conditions: Chand
How is Iridocorneal endothelial syndrome inherited?
Iridocorneal endothelial syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Iridocorneal endothelial syndrome typically begin?
Typical onset of Iridocorneal endothelial syndrome is adult. Age of onset can vary across affected individuals.
Which specialists treat Iridocorneal endothelial syndrome?
17 specialists and care centers treating Iridocorneal endothelial syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.