Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome

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ORPHA:480898OMIM:616875Q87.8
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Overview

Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome, sometimes referred to by the abbreviation GDVCAT or by its Orphanet code 480898, is a very rare genetic brain disorder that affects how the nervous system develops and works. The condition is caused by changes (mutations) in a specific gene that disrupt normal brain development, particularly in an area at the back of the brain called the cerebellum, which controls balance and coordination. Over time, the cerebellum gradually shrinks, a process called cerebellar atrophy. Children with this syndrome typically show signs early in life, including weak muscle tone in the trunk (truncal hypotonia), delays in reaching developmental milestones like sitting, walking, and talking, and problems with vision. The visual problems can include unusual eye movements or structural changes in the eyes. Because the cerebellum continues to deteriorate over time, symptoms often get worse as the child grows. There is currently no cure for this condition. Treatment focuses on managing symptoms and supporting development through physical therapy, occupational therapy, speech therapy, and regular monitoring by a team of specialists. Early intervention is important to help children reach their best possible potential.

Key symptoms:

Global developmental delay (slow progress in motor, speech, and thinking skills)Low muscle tone in the trunk (truncal hypotonia), making it hard to sit or stand uprightProgressive shrinkage of the cerebellum (cerebellar atrophy) seen on brain scansVision problems or unusual eye movementsPoor coordination and balanceDelayed or absent walkingSpeech and language delaysIntellectual disabilityAbnormal eye structure or functionUnsteady or wobbly movements (ataxia)

Clinical phenotype terms (31)— hover any for plain English
Corpus callosum atrophyHP:0007371Diffuse cerebellar atrophyHP:0100275Prominent fingertip padsHP:0001212Limb hypertoniaHP:0002509Dystonic gaitHP:0031954
Inheritance

Autosomal recessive

Passed on when both parents carry the same gene change; often skips generations

Age of Onset

Infantile

Begins in infancy, roughly 1 month to 2 years old

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome.

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No actively recruiting trials found for Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome at this time.

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No specialists are currently listed for Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome

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Caregiver Resources

NORD Caregiver Resources

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Mental Health Support

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Social Security Disability

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Questions for your doctor

Bring these to your next appointment

  • Q1.Which specific gene mutation has been found in my child, and what does it mean for their prognosis?,How often should we repeat brain MRI scans to monitor cerebellar atrophy?,What therapies are most important to start right away, and how often should they happen?,Are there any clinical trials or research studies we should consider enrolling in?,What signs should prompt us to go to the emergency room?,How can we best support my child's learning and communication at school?,Should other family members be tested for this genetic change?

Common questions about Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome

What is Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome?

Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome, sometimes referred to by the abbreviation GDVCAT or by its Orphanet code 480898, is a very rare genetic brain disorder that affects how the nervous system develops and works. The condition is caused by changes (mutations) in a specific gene that disrupt normal brain development, particularly in an area at the back of the brain called the cerebellum, which controls balance and coordination. Over time, the cerebellum gradually shrinks, a process called cerebellar atrophy. Children with this sy

How is Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome inherited?

Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome typically begin?

Typical onset of Global developmental delay-visual anomalies-progressive cerebellar atrophy-truncal hypotonia syndrome is infantile. Age of onset can vary across affected individuals.