Overview
Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome is an extremely rare condition that has been described in medical literature but is now classified as obsolete in disease databases, meaning it may have been reclassified or merged with another condition. This syndrome was characterized by a combination of three main features: agenesis (absence) of the corpus callosum (the band of nerve fibers connecting the two halves of the brain), a double urinary collecting system (a structural abnormality of the kidneys where there are two sets of tubes draining urine instead of one), and trigonocephaly (a triangular shape of the forehead caused by premature fusion of a skull bone). Children born with this condition could experience developmental delays, intellectual disability, and various physical abnormalities. Because this condition is so rare and now considered obsolete in classification systems, very little is known about its full range of symptoms, underlying genetic cause, or optimal treatment. Management would have been supportive and symptom-based, potentially involving neurosurgery, urology, and craniofacial surgery depending on the severity of each feature. Families affected by this condition should work closely with a clinical geneticist to determine whether a more current diagnosis or classification applies.
Also known as:
Key symptoms:
Triangular-shaped forehead (trigonocephaly)Absence of the connection between the two brain halvesDouble collecting system in the kidneysDevelopmental delaysIntellectual disabilityUnusual facial featuresPossible seizuresLearning difficultiesPossible urinary tract infections due to kidney abnormalityAbnormal head shape
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome.
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 OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly 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
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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.Has this diagnosis been reclassified under a different or more current condition name?,What genetic testing should we pursue to better understand the cause?,Does my child need surgery for the skull shape abnormality, and if so, when?,How should we monitor the double collecting system in the kidneys?,What early intervention services should we start right away?,Are there any clinical trials or research studies relevant to this condition?,What is the expected developmental outlook for my child?
Common questions about OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome
What is OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome?
Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome is an extremely rare condition that has been described in medical literature but is now classified as obsolete in disease databases, meaning it may have been reclassified or merged with another condition. This syndrome was characterized by a combination of three main features: agenesis (absence) of the corpus callosum (the band of nerve fibers connecting the two halves of the brain), a double urinary collecting system (a structural abnormality of the kidneys where there are two sets of tubes draining urine instea
At what age does OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome typically begin?
Typical onset of OBSOLETE: Corpus callosum agenesis-double urinary collecting system-trigonocephaly syndrome is neonatal. Age of onset can vary across affected individuals.