Overview
Congenital pseudoarthrosis of the clavicle (CPC) is a rare condition that a baby is born with, where the collarbone (clavicle) fails to form properly. Instead of being one solid bone, there is a gap or false joint — called a pseudoarthrosis — usually in the middle of the collarbone. This happens during development before birth and is almost always seen on the right side of the body. In rare cases, it can affect both sides, which is often linked to a condition called situs inversus, where the heart and other organs are mirrored from their usual positions. Most children with CPC have a visible or felt lump on the collarbone, but they are usually not in much pain during early childhood. Over time, some children may notice discomfort, limited shoulder movement, or cosmetic concerns as they grow. The bump may become more noticeable with age. Treatment depends on symptoms and age. Some children are monitored without surgery, while others benefit from an operation to repair the gap and stabilize the collarbone using bone grafts and fixation devices. Surgery is generally recommended before school age for the best results. With proper treatment, most children do very well and can lead full, active lives.
Also known as:
Key symptoms:
A visible or palpable lump or bump on the collarbone, almost always on the right sideA gap or abnormal movement felt in the middle of the collarboneMild shoulder discomfort or pain, especially with activity, which may worsen with ageLimited range of motion in the shoulder on the affected sideCosmetic concern due to the visible bump on the chest or shoulder areaWeakness or fatigue in the affected arm with prolonged useAsymmetry of the shoulders or chest wall appearance
Clinical phenotype terms (6)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Congenital pseudoarthrosis of the clavicle.
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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 Congenital pseudoarthrosis of the clavicle.
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Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.Does my child need surgery now, or is it safe to wait and monitor?,What is the best age for surgery, and what happens if we delay it?,What type of surgery do you recommend, and what does recovery look like?,Will my child be able to play sports and do normal activities after treatment?,Are there any risks of nerve or blood vessel damage from the surgery?,How often will my child need follow-up appointments and X-rays?,Is there any chance this condition is related to another underlying syndrome we should test for?
Common questions about Congenital pseudoarthrosis of the clavicle
What is Congenital pseudoarthrosis of the clavicle?
Congenital pseudoarthrosis of the clavicle (CPC) is a rare condition that a baby is born with, where the collarbone (clavicle) fails to form properly. Instead of being one solid bone, there is a gap or false joint — called a pseudoarthrosis — usually in the middle of the collarbone. This happens during development before birth and is almost always seen on the right side of the body. In rare cases, it can affect both sides, which is often linked to a condition called situs inversus, where the heart and other organs are mirrored from their usual positions. Most children with CPC have a visible
How is Congenital pseudoarthrosis of the clavicle inherited?
Congenital pseudoarthrosis of the clavicle follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Congenital pseudoarthrosis of the clavicle typically begin?
Typical onset of Congenital pseudoarthrosis of the clavicle is neonatal. Age of onset can vary across affected individuals.
Which specialists treat Congenital pseudoarthrosis of the clavicle?
4 specialists and care centers treating Congenital pseudoarthrosis of the clavicle are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.