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NCT05368064
Cleidocranial Dysplasia (CCD): From Genotype to Phenotype and Considerations for Care
trial testing observational in Cleidocranial Dysostosis in 300 participants. Enrolling by invitation.
31 December 2027
Quick facts
| Lead sponsor | Johns Hopkins University |
|---|---|
| Status | ENROLLING BY INVITATION |
| Study type | OBSERVATIONAL |
| Enrollment | 300 |
| Start date | 1 October 2021 |
| Primary completion | 31 December 2027 |
| Estimated completion | 31 December 2028 |
| Sites | 1 location across United States |
Drugs / interventions tested
- observational — full drug profile →
Conditions studied
- Cleidocranial Dysostosis — all drugs for Cleidocranial Dysostosis →
Sponsor
Johns Hopkins University
Who can join
Eligibility, any sex, with Cleidocranial Dysostosis. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
Cleidocranial Dysplasia (CCD) is a rare, autosomal dominant disorder characterized by dysplasia of bones and teeth. Given the rarity of this condition (prevalence of 1 in 1,000,000), the variable phenotype and lack of correlation to specific genotypes, coordinated clinical research is needed to better understand CCD. The purpose of this project is to: investigate the genetic makeup and phenotypic expression of CCD, understand the quality of life for patients with this diagnosis, and further identify the multidimensional healthcare needs of these patients. Participation involves completion of a survey to ascertain medical history and quality of life, a physical exam and research whole exome sequencing from a blood or saliva sample. The goal of this research is to elucidate critical pathways in skeletal and dental development and improve quality of life for CCD patients through the standardization and optimization of timely diagnosis and multidisciplinary care.
Publications & conference data
No peer-reviewed publications indexed yet for this trial.
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Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT05368064 (US National Library of Medicine, public domain)
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by Johns Hopkins University
- Last refreshed: 22 October 2025
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