Overview
Progressive supranuclear palsy-corticobasal syndrome (PSP-CBS) is a rare brain disorder that belongs to a group of conditions called tauopathies, where an abnormal protein called tau builds up in brain cells and causes them to die. This condition combines features of two related diseases: progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). It is sometimes referred to as PSP with corticobasal features or an overlap syndrome between PSP and CBS. People with PSP-CBS typically develop problems with movement, balance, and thinking in their 60s or 70s. Common symptoms include stiffness and clumsiness that is worse on one side of the body (asymmetric), difficulty controlling eye movements (especially looking downward), problems with balance leading to falls, slowed movements, speech difficulties, and progressive cognitive decline. The affected person may also experience a phenomenon called "alien limb," where one hand seems to move on its own. There is currently no cure for PSP-CBS, and treatment focuses on managing symptoms and maintaining quality of life. Physical therapy, occupational therapy, and speech therapy play important roles. Some medications used for Parkinson's disease, such as levodopa, may be tried but usually provide limited benefit. The disease is progressive, meaning symptoms worsen over time. Research into tau-targeting therapies and other disease-modifying treatments is ongoing, offering hope for future breakthroughs.
Also known as:
Key symptoms:
Stiffness and rigidity worse on one side of the bodyDifficulty looking up or down with the eyesFrequent falls, especially backwardSlowed movementsClumsiness or loss of coordination in one handAlien limb phenomenon (a hand that seems to move on its own)Difficulty speaking or slurred speechTrouble swallowingProblems with thinking, planning, and memoryPersonality or behavior changesDifficulty writingMuscle jerking or tremor in one limbPoor balanceDepression or apathy
Clinical phenotype terms (30)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Late onset
Begins later in life, typically after age 50
Treatments
No FDA-approved treatments are currently listed for Progressive supranuclear palsy-corticobasal 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 Progressive supranuclear palsy-corticobasal syndrome.
Community
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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.What subtype of PSP do I have, and how does PSP-CBS differ from other forms?,What is the expected rate of progression in my case?,Are there any clinical trials or experimental treatments I might be eligible for?,What therapies (physical, occupational, speech) should I start now to maintain function?,How should we plan for future care needs, including swallowing difficulties and mobility loss?,Should my family members consider genetic testing?,What resources or support groups are available for patients and caregivers?
Common questions about Progressive supranuclear palsy-corticobasal syndrome
What is Progressive supranuclear palsy-corticobasal syndrome?
Progressive supranuclear palsy-corticobasal syndrome (PSP-CBS) is a rare brain disorder that belongs to a group of conditions called tauopathies, where an abnormal protein called tau builds up in brain cells and causes them to die. This condition combines features of two related diseases: progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS). It is sometimes referred to as PSP with corticobasal features or an overlap syndrome between PSP and CBS. People with PSP-CBS typically develop problems with movement, balance, and thinking in their 60s or 70s. Common symptoms include stif
How is Progressive supranuclear palsy-corticobasal syndrome inherited?
Progressive supranuclear palsy-corticobasal syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Progressive supranuclear palsy-corticobasal syndrome typically begin?
Typical onset of Progressive supranuclear palsy-corticobasal syndrome is late onset. Age of onset can vary across affected individuals.
Which specialists treat Progressive supranuclear palsy-corticobasal syndrome?
25 specialists and care centers treating Progressive supranuclear palsy-corticobasal syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.