Craniosynostosis is defined as the premature fusion of one or more cranial sutures leading to secondary distortion of skull shape resulting in skull deformities with a variable presentation. Craniosyn...
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 10, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 10, 2026
The limited documentation surrounding craniosynostosis is due to its relatively rare occurrence, which restricts the scope of systematic clinical studies. Additionally, the complexity of cranial suture development and the variability in clinical presentation contribute to challenges in characterizing the condition comprehensively. Ongoing research efforts aim to improve understanding and management of craniosynostosis.
To navigate craniosynostosis, consider consulting with a craniofacial specialist who has experience in treating this condition. Resources such as the Children’s Craniofacial Association (CCA) at https://ccakids.com and AmeriFace at http://ameriface.org can provide support and information. Participation in patient registries or natural history studies may also be beneficial, though specific opportunities are currently limited. Genetic counseling can be valuable, especially if there is a concern about familial patterns, even without identified genes.
There are currently 24 active clinical trials investigating various aspects of craniosynostosis. These trials may explore surgical techniques, management strategies, and long-term outcomes. For more information, you can search the active trials at ClinicalTrials.gov using the following link: https://clinicaltrials.gov/search?cond=craniosynostosis.
Actionable guidance for navigating care for craniosynostosis
To navigate craniosynostosis, consider consulting with a craniofacial specialist who has experience in treating this condition. Resources such as the Children’s Craniofacial Association (CCA) at https://ccakids.com and AmeriFace at http://ameriface.org can provide support and information. Participation in patient registries or natural history studies may also be beneficial, though specific opportunities are currently limited. Genetic counseling can be valuable, especially if there is a concern about familial patterns, even without identified genes.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the craniosynostosis community
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 10, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
2 peer-reviewed sources from PubMed
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.