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PubMed This is a summary of 13 peer-reviewed journal articles Updated
Pediatric Orthopedics · Congenital pseudarthrosis of the clavicle

Building Your Care Team

At a Glance

The primary specialist for congenital pseudarthrosis of the clavicle (CPC) is a pediatric orthopedic surgeon experienced in rare bone anomalies. Bring original X-rays and birth records to your first visit so the doctor can confirm the diagnosis and plan appropriate treatment for your child.

Because congenital pseudarthrosis of the clavicle (CPC) is a rare condition, the most important step in your child’s care is connecting with the right specialists. While many doctors treat broken collarbones, CPC is a developmental anomaly that requires a different level of expertise [1][2].

Your Primary Specialist: The Pediatric Orthopedic Surgeon

A pediatric orthopedic surgeon is the lead specialist for CPC. They specialize in the growing bones of children and have the specific training required to perform the delicate surgery to join the two bone segments [3][4].

When vetting a surgeon, look for those who:

  • Focus on Congenital Anomalies: Ask if they have a specific interest in rare bone malformations rather than just sports injuries or common fractures.
  • Professional Affiliations: Membership in organizations like POSNA (Pediatric Orthopaedic Society of North America) or EPOS (European Paediatric Orthopaedic Society) indicates a commitment to the specialized field of pediatric orthopedics.
  • Experience with CPC: Because CPC is rare, a surgeon may only see a few cases a year. It is important to ask how they have handled similar cases in the past [5].

Other Potential Team Members

While most cases of CPC are isolated, certain situations may involve other experts:

  • Medical Geneticist: If your child has other physical traits—such as dental delays, a large “soft spot” on the head, or specific skin marks—a geneticist can help rule out conditions like Cleidocranial Dysplasia (CCD) or Neurofibromatosis Type 1 (NF1) [1][6].
  • Vascular Specialist: In extremely rare cases where the “false joint” presses on a major blood vessel, a vascular specialist may be consulted to ensure healthy circulation to the arm [7].

Preparing for Your First Appointment

To get the most out of your first consultation, you should arrive prepared with “artifacts” from your child’s medical history. Specialists need more than just a written summary; they need to see the actual evidence.

  • Original X-ray Images: Bring the actual digital images (usually on a CD or accessible through a patient portal), not just the written radiologist’s report. The surgeon will want to look for specific “smooth ends” of the bone that distinguish CPC from a healing fracture [8][9].
  • Pregnancy and Birth Records: While CPC is not caused by birth trauma, having records that confirm a painless lump was present shortly after birth can help the doctor confirm the diagnosis and rule out a fracture [10][8].
  • Family History: Note if any relatives had similar collarbone issues or other “rare bone” diagnoses [11].

Choosing a care team is about more than just finding a skilled surgeon; it’s about finding a team that listens to your concerns and respects the unique needs of a child with a rare condition [12][13].

Navigate:

Common questions in this guide

What kind of doctor treats congenital pseudarthrosis of the clavicle?
A pediatric orthopedic surgeon is the primary specialist for this condition. Because CPC is a rare developmental anomaly, it is highly recommended to find a surgeon who specifically focuses on congenital bone malformations rather than just common sports injuries or fractures.
Will my child need to see a medical geneticist for CPC?
Most cases of CPC are isolated, but a referral to a geneticist may be recommended if your child has other physical traits, such as dental delays or a large soft spot on the head. A geneticist can help determine if the collarbone issue is part of an underlying condition like Cleidocranial Dysplasia.
What records should I bring to my child's first orthopedic appointment?
You should bring the original X-ray images on a disc or via a patient portal, rather than just the written radiologist report. It is also very helpful to bring pregnancy and birth records to confirm that a painless lump was present shortly after birth.
How does a specialist tell the difference between CPC and a broken collarbone?
A specialist will look at the actual X-ray images to find the specific smooth ends of the bone that indicate a developmental false joint. This visual evidence, along with a history of the lump being present near birth, distinguishes CPC from a standard healing collarbone fracture.
What questions should I ask a surgeon about treating my child's CPC?
You should ask how many actual cases of CPC they have treated in their career and what age they recommend for surgical repair. It is also useful to ask about their preferred surgical fixation methods and whether they feel comfortable managing the condition without a genetics referral.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many cases of congenital pseudarthrosis of the clavicle (as opposed to standard fractures) have you treated in your career?
  2. 2.Do you feel comfortable managing this as an isolated condition, or do we need to see a geneticist to rule out other syndromes?
  3. 3.In your experience, what is the best age to perform a surgical repair for this specific condition?
  4. 4.Are you a member of a professional organization like POSNA (Pediatric Orthopaedic Society of North America) or EPOS (European Paediatric Orthopaedic Society)?
  5. 5.What fixation method (plates vs. pins) do you recommend and why?

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References

References (13)
  1. 1

    [When to think about pediatric congenital pseudoarthrosis of the clavicle? Presentation of 2 cases].

    Justich Zabala PR, Giniger Vidal RP, Rubio Pérez MJ, et al.

    Archivos argentinos de pediatria 2020; (118(2)):e194-e198 doi:10.5546/aap.2020.e194.

    PMID: 32199064
  2. 2

    Congenital Clavicular Pseudoarthosis-How to Differentiate It From the More Common Clavicular Fractures.

    Chalfant JS, Sanchez TR

    Pediatric emergency care 2019; (35(2)):e37-e39 doi:10.1097/PEC.0000000000001118.

    PMID: 28463941
  3. 3

    Comparison of two methods in the treatment of congenital pseudarthrosis of clavicle: multicenter experience.

    Li J, Tang SP, Mei HB, et al.

    Journal of orthopaedic surgery and research 2021; (16(1)):301 doi:10.1186/s13018-021-02438-x.

    PMID: 33964943
  4. 4

    Surgical Management of Congenital Pseudoarthrosis of the Clavicle: A Review of Current Concepts.

    Alsaeed AA

    Cureus 2021; (13(10)):e18482 doi:10.7759/cureus.18482.

    PMID: 34754644
  5. 5

    Congenital Pseudarthrosis of the Clavicle in Children: A Systematic Review.

    Depaoli A, Zarantonello P, Gallone G, et al.

    Children (Basel, Switzerland) 2022; (9(2)) doi:10.3390/children9020147.

    PMID: 35204869
  6. 6

    A novel single-base deletion of the RUNX Family Transcription Factor 2 gene associated with cleidocranial dysplasia.

    Pan Y, Lu W, Meng W, et al.

    European journal of oral sciences 2023; (131(1)):e12910 doi:10.1111/eos.12910.

    PMID: 36598486
  7. 7

    Thoracic Outlet Syndrome Secondary to Vascular Insufficiency from Congenital Pseudarthrosis of the Clavicle: A Case Report.

    Hysong AA, Denduluri SK, Arko FR, et al.

    JBJS case connector 2023; (13(2)) doi:10.2106/JBJS.CC.22.00426.

    PMID: 37279298
  8. 8

    A Case of Bilateral Congenital Pseudoarthrosis of Clavicle: An Uncommon Variant of a Rare Disorder.

    Boeisa AN, Alshammary AA, Albunyan S, et al.

    Cureus 2024; (16(8)):e66594 doi:10.7759/cureus.66594.

    PMID: 39252736
  9. 9

    Bilateral congenital pseudoarthrosis of the clavicles in a newborn.

    Kalagiri RR, Govande V, Hemingway M, Beeram MR

    Proceedings (Baylor University. Medical Center) 2016; (29(4)):387-388 doi:10.1080/08998280.2016.11929478.

    PMID: 27695169
  10. 10

    Congenital Pseudarthrosis of the Clavicle: A Case Report and a Hypothesis for the Right-Side Predominance.

    Al-Abdi SY, Khalil AM, Elnamky AN, Sherif KE

    Cureus 2022; (14(9)):e29157 doi:10.7759/cureus.29157.

    PMID: 36259035
  11. 11

    A Clinical Odyssey Involving Cleidocranial Dysplasia: Report of a Rare Case.

    Agarwal N, Daigavane P, Kamble R, Suchak D

    Cureus 2023; (15(12)):e51024 doi:10.7759/cureus.51024.

    PMID: 38264393
  12. 12

    ERN BOND: The key European network leveraging diagnosis, research, and treatment for rare bone conditions.

    Casareto L, Appelman-Dijkstra NM, Brandi ML, et al.

    European journal of medical genetics 2024; (68()):104916 doi:10.1016/j.ejmg.2024.104916.

    PMID: 38296035
  13. 13

    Current and Emerging Therapeutic Options for the Management of Rare Skeletal Diseases.

    Semler O, Rehberg M, Mehdiani N, et al.

    Paediatric drugs 2019; (21(2)):95-106 doi:10.1007/s40272-019-00330-0.

    PMID: 30941653

This page provides educational information on assembling a care team for congenital pseudarthrosis of the clavicle. It is not a substitute for professional medical advice, diagnosis, or treatment for your child.

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