Connective Tissue

Cleidocranial Dysplasia

Also known as CCD, Scheuthauer-Marie-Sainton disease, RUNX2 haploinsufficiency

Cleidocranial dysplasia is caused by haploinsufficiency of RUNX2, the master transcription factor for osteoblast differentiation, resulting in defective intramembranous and endochondral ossification that primarily affects the clavicles, sku

ORPHA:1452 ↗Gene RUNX2Prevalence 1 in 1,000,000Onset CongenitalGenetic — autosomal dominant

0

studies recruiting now

as of 7 Sept 2026

1

studies registered in total

as of 7 Sept 2026

0

countries with a recruiting site

as of 7 Sept 2026

None

recruiting study posted to date

among recruiting studies

Recruiting trials

No recruiting trial found right now.

1 study is registered for Cleidocranial Dysplasia, but none was recruiting as of 7 Sept 2026. Here is what is still worth doing.

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About Cleidocranial Dysplasia

Cleidocranial dysplasia is caused by haploinsufficiency of RUNX2, the master transcription factor for osteoblast differentiation, resulting in defective intramembranous and endochondral ossification that primarily affects the clavicles, skull, and dentition. The pathognomonic clinical sign is hypoplasia or complete aplasia of the clavicles, enabling patients to approximate the shoulders in front of the chest; delayed closure of cranial sutures produces a large head with persistent fontanelles, and severe dental anomalies including multiple supernumerary teeth and impacted permanent dentition are universal. Intelligence is normal and life expectancy is not significantly reduced, though orthopaedic and dental complications require ongoing management.

Common clinical features

Clavicular hypoplasia or aplasia allowing shoulder approximationDelayed or absent closure of cranial sutures and fontanellesSupernumerary teeth and impacted permanent dentitionBrachycephaly and frontal, parietal, and occipital bossingShort statureCoxa vara and genu valgumSinus and middle ear infections from midface hypoplasia

From Orphanet’s phenotype annotations (CC BY 4.0). Not a complete list.

Before you apply

Things trial teams commonly ask about for Cleidocranial Dysplasia. Not eligibility rules; those are set by each study.

  • Dental panoramic radiographs (OPG) documenting supernumerary teeth and retained primary teeth are standard diagnostic evidence and may be requested at screening to confirm clinical diagnosis.
  • Skeletal survey including chest radiograph (clavicle morphology), skull radiograph (suture patency), and pelvis radiograph should be available as baseline documentation.
  • RUNX2 molecular testing should confirm a pathogenic variant; approximately 10–30% of clinically diagnosed CCD cases have no identifiable RUNX2 coding variant, and some trials may require confirmed molecular diagnosis.

Related conditions

Information, not medical advice. Trial listings are shown as recorded on ClinicalTrials.gov; whether any study is right for you is a decision for you and your clinicians, and eligibility is decided by each research team. Disease information from Orphanet (CC BY 4.0).