Overview
Cancer-associated retinopathy (CAR) is a rare condition where the immune system accidentally attacks the light-sensing cells in the back of the eye (the retina) in people who have cancer elsewhere in the body. It is also sometimes called paraneoplastic retinopathy or paraneoplastic visual syndrome. The body produces antibodies to fight the cancer, but these same antibodies mistakenly target proteins in the retina, causing damage to the cells that allow you to see. The most common cancers linked to CAR are small cell lung cancer, breast cancer, gynecological cancers (such as ovarian and cervical cancer), and colon cancer. Symptoms often appear before the cancer is even diagnosed, which makes CAR an important warning sign that something else may be going on in the body. The main symptoms include progressive vision loss, difficulty seeing in dim light (night blindness), sensitivity to light, and seeing flashing lights or shimmering effects. Treatment focuses on managing the immune response and treating the underlying cancer. There is no cure, but immunosuppressive therapies — medicines that calm the immune system — can sometimes slow vision loss. Early detection is very important because the damage to the retina can become permanent if not addressed quickly.
Also known as:
Key symptoms:
Gradual or sudden loss of vision in one or both eyesDifficulty seeing in low light or at night (night blindness)Sensitivity to bright light (photophobia)Seeing flashing lights, shimmering, or flickering (photopsias)Loss of color visionBlind spots or missing areas in the field of visionBlurry or hazy visionNarrowing of the visual field (tunnel vision)Difficulty adjusting from bright to dark environmentsEye fatigue or discomfort
Clinical phenotype terms (36)— 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
10 eventsARCE Therapeutics, Inc.
Allogene Therapeutics — PHASE1
Instituto de Investigacion Sanitaria INCLIVA — NA
Chongqing Precision Biotech Co., Ltd — PHASE1
Anhui Provincial Hospital — NA
Centre Hospitalier Universitaire de Saint Etienne — PHASE4
Institute of Hematology & Blood Diseases Hospital, China — PHASE1
OHSU Knight Cancer Institute — PHASE2
ARCE Therapeutics, Inc. — PHASE1, PHASE2
The Children's Hospital of Zhejiang University School of Medicine — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableGAVRETO�
GAVRETO is indicated for the treatment of adult and pediatric patients 12 years of age and older with advanced or metastatic RET fusion-positive thyroid cancer who require systemic therapy and who are…
GAVRETO is indicated for the treatment of adult and pediatric patients 12 years of age and older with advanced or metastatic RET fusion-positive thyroid cancer who require systemic therapy and who are radioactive iodine-refractory (if radioactive iodine is appropriate).
Rare Disease Specialist
Rare Disease Specialist
Rare Disease Specialist
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 Cancer-associated retinopathy.
Community
No community posts yet. Be the first to share your experience with Cancer-associated retinopathy.
Start the conversation →Latest news about Cancer-associated retinopathy
Disease timeline:
New recruiting trial: Adjunctive Methylene Blue for Immunotherapy-related CRS and ICANS: Phase I Study
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: Clinical Study of ARD103 CAR-T Therapy for Patients With R/R AML or MDS
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: CD7 CAR-T Cell Sequential Allo-HSCT for Non-malignant Blood and Immune System Diseases
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: Chimeric Antigen Receptor Natural Killer Cell Therapy for High-risk Lymphoma Patients With Primary Sjogren's Syndrome
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: Anti CD19/BCMA CAR Gene Therapy for Autoimmune Diseases
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: A Study of OL-CD19-GDT in Relapsed/ Refractory Autoimmune Diseases
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: Phase 2 Study of Rapcabtagene Autoleucel in Myositis
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: Temporal Characterization of Extracellular Vesicles During Cellular Therapy Using CAR-T Cells and During the Occurrence of Immune Effector Cell-Associated Neurotoxicity Syndrome
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: The Effect of Chimeric Antigen Receptor (CAR)-T Cell Therapy on the Reconstitution of HIV-specific Immune Function
A new clinical trial is recruiting patients for Cancer-associated retinopathy
New recruiting trial: ALaCART-B: Acute Leukemia and Chimeric Antigen Receptor-T Cell Therapy for B-lymphoblastic Leukemia.
A new clinical trial is recruiting patients for Cancer-associated retinopathy
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 specific anti-retinal antibodies were found in my blood, and what do they mean for my prognosis?,Has a thorough search been done to find the cancer that may be causing my eye symptoms?,What treatment options are available to slow my vision loss, and what are the risks of each?,How quickly could my vision change, and what signs should prompt me to seek emergency care?,Are there any clinical trials for CAR that I might be eligible for?,What low vision rehabilitation services are available to help me adapt to my vision changes?,How will treating my cancer affect my eye condition?
Common questions about Cancer-associated retinopathy
What is Cancer-associated retinopathy?
Cancer-associated retinopathy (CAR) is a rare condition where the immune system accidentally attacks the light-sensing cells in the back of the eye (the retina) in people who have cancer elsewhere in the body. It is also sometimes called paraneoplastic retinopathy or paraneoplastic visual syndrome. The body produces antibodies to fight the cancer, but these same antibodies mistakenly target proteins in the retina, causing damage to the cells that allow you to see. The most common cancers linked to CAR are small cell lung cancer, breast cancer, gynecological cancers (such as ovarian and cervic
How is Cancer-associated retinopathy inherited?
Cancer-associated retinopathy follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Cancer-associated retinopathy typically begin?
Typical onset of Cancer-associated retinopathy is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Cancer-associated retinopathy?
Yes — 2 recruiting clinical trials are currently listed for Cancer-associated retinopathy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Cancer-associated retinopathy?
25 specialists and care centers treating Cancer-associated retinopathy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.