3-methylglutaconic aciduria type 1

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ORPHA:67046OMIM:250950E71.1
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8Treatment centers

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Overview

3-methylglutaconic aciduria type 1 (also called MGA type 1 or 3-MGA type 1) is a rare inherited metabolic disorder. It belongs to a group of conditions where the body cannot properly break down certain building blocks of proteins, specifically an amino acid called leucine. When leucine is not broken down correctly, a substance called 3-methylglutaconic acid builds up in the blood and urine. This happens because of a shortage of an enzyme called 3-methylglutaconyl-CoA hydratase, which is needed to complete this process. The condition can affect the brain and nervous system, leading to symptoms like speech delays, learning difficulties, and problems with movement and coordination. Some children have very mild symptoms, while others are more significantly affected. Symptoms often appear in infancy or early childhood. There is currently no cure for 3-methylglutaconic aciduria type 1. Treatment focuses on managing symptoms and may include a low-leucine diet to reduce the buildup of harmful substances, along with supportive therapies like speech therapy and physical therapy. With careful management, many individuals can lead meaningful lives, though ongoing monitoring by a metabolic specialist is important.

Also known as:

Key symptoms:

Speech delay or difficulty speakingIntellectual disability or learning difficultiesProblems with coordination and balanceMuscle weakness or low muscle toneDelayed developmental milestones (such as walking or talking)Elevated levels of 3-methylglutaconic acid in urineBehavioral difficultiesMild neurological problems

Clinical phenotype terms (13)— hover any for plain English
Abnormal basal ganglia morphologyHP:00021343-Methylglutaconic aciduriaHP:0003535
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 3-methylglutaconic aciduria type 1.

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No actively recruiting trials found for 3-methylglutaconic aciduria type 1 at this time.

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No specialists are currently listed for 3-methylglutaconic aciduria type 1.

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 3-methylglutaconic aciduria type 1.

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Community

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.How severe is my child's condition based on their test results, and what does that mean for their development?,What specific dietary changes are needed, and how do we make sure my child still gets enough nutrition?,What should I do if my child gets sick and cannot eat — is there an emergency plan?,Which therapies (speech, physical, occupational) would benefit my child most right now?,How often do we need to do blood and urine tests to monitor the condition?,Should other family members be tested for this condition?,Are there any clinical trials or new treatments being studied that my child might qualify for?

Common questions about 3-methylglutaconic aciduria type 1

What is 3-methylglutaconic aciduria type 1?

3-methylglutaconic aciduria type 1 (also called MGA type 1 or 3-MGA type 1) is a rare inherited metabolic disorder. It belongs to a group of conditions where the body cannot properly break down certain building blocks of proteins, specifically an amino acid called leucine. When leucine is not broken down correctly, a substance called 3-methylglutaconic acid builds up in the blood and urine. This happens because of a shortage of an enzyme called 3-methylglutaconyl-CoA hydratase, which is needed to complete this process. The condition can affect the brain and nervous system, leading to symptoms

How is 3-methylglutaconic aciduria type 1 inherited?

3-methylglutaconic aciduria type 1 follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does 3-methylglutaconic aciduria type 1 typically begin?

Typical onset of 3-methylglutaconic aciduria type 1 is infantile. Age of onset can vary across affected individuals.