CraniosynostosisUseful web links

Section 1.1

• Children’s Craniofacial Association (2015) A Guide to Understanding Craniosynostosis. 
• FACES: National Craniofacial Association (n.d.)  Craniosynostosis.
• Genetic and Rare Diseases Information Center (2023) Craniosynostosis.
• National Organization for Rare Disorders (2023) Primary Craniosynostosis.

Section 1.2

• American Academy of Pediatrics (2020) Uneven Head Shape in Babies: Causes and Treatment of Craniosynostosis.

Section 1.3

• Centers for Disease Control and Prevention (2023) Facts about Craniosynostosis.

Section 1.4

• Centers for Disease Control and Prevention (2023) Facts about Craniosynostosis.
• Centers for Disease Control and Prevention (2023) Prevalence - Health, United States (cdc.gov).
• Gillette Children’s (2023) Craniosynostosis.

Section 1.5

• World Health Organization (2022) Growth Charts.

Section 1.6

• American Society of Craniofacial Surgeons (n.d.) Craniosynostosis.

Section 1.7

• Centers for Disease Control and Prevention (2022) What is Health Equity? 
• Centers for Disease Control and Prevention (2023) Minority Health.
• The SHARE Approach: A Model for Shared Decisionmaking - Fact Sheet | Agency for Healthcare Research and Quality (ahrq.gov) 
• US Department of Health and Human Services Healthy People 2030 (n.d.) Health Equity in Healthy People 2030.
• World Health Organization (2023) Social determinants of health.  

Section 2.1

• Children’s Craniofacial Association (2015) A Guide to Understanding Craniosynostosis.

Section 2.2

• Gillette Children’s (2023) Craniosynostosis.

Section 2.3

• Gillette Children’s (2023) Craniosynostosis.

Section 2.4

• Gillette Children’s (2023) Craniosynostosis.

Section 2.5

• Gillette Children’s (2023) Craniosynostosis.
• American Academy of Pediatrics (2020) American Academy of Pediatrics Releases Clinical Report: Differentiating Infant Head Shape Abnormalities.

Section 2.6

• American Society of Craniofacial Surgeons (n.d.) Craniosynostosis.
• American Psychological Association (2024) Clinical Neuropsychology.

Section 3.1

• Children’s Craniofacial Association (n.d.) Syndromes.

Section 3.2

• Gillette Children’s (n.d.) Apert Syndrome. 
• Genetic and Rare Diseases Information Center (2023) Apert Syndrome. 
• Genetic and Rare Diseases Information Center (2023) Crouzon syndrome. 
• Genetic and Rare Diseases Information Center (2023) Muenke syndrome. 
• Genetic and Rare Diseases Information Center (2023) Pfeiffer syndrome. 
• Genetic and Rare Diseases Information Center (2023) Saethre-Chotzen syndrome. 
• National Organization for Rare Disorders (2019) Apert syndrome. 
• National Organization for Rare Disorders (2019) Crouzon syndrome. 
• National Organization for Rare Disorders (2022) Pfeiffer syndrome. 
• National Organization for Rare Disorders (2023) Muenke syndrome. 
• National Organization for Rare Disorders (2015) Saethre-Chotzen syndrome. 

Section 3.3

• Centers for Disease Control and Prevention (2022) Genetics Basics. 
• Centers for Disease Control and Prevention (2022) Genetic Counseling and Testing. 

Section 3.4

• National Craniofacial Association (n.d) Apert syndrome. 
• National Craniofacial Association (n.d) Crouzon syndrome.  
• National Craniofacial Association (n.d) Pfeiffer syndrome.  
• National Craniofacial Association (n.d.) Saethre-Chotzen syndrome.

Section 3.5

• American Academy of Pediatrics (2017) Children with Congenital Hand Anomalies & Malformations.

Section 3.6

None

Section 3.7

• American Psychological Association (2024) Clinical Neuropsychology. 

Section 4.1

• Gillette Children’s (n.d) Craniosynostosis Surgery (Cranial Vault Remodeling). 

Section 4.2

• American Cleft Palate Craniofacial Association (n.d.) Find an ACPA Approved Team.
• American Cleft Palate Craniofacial Association (n.d.) Find an International Team.
• World Health Organization (2021) Malnutrition. 

Section 4.3

• International Society of Craniofacial Surgery (n.d.) What is Craniofacial Surgery? 

Section 4.4

• Gillette Children’s (2022) Managing Your Child’s Pain at Home After Surgery. 

Section 5.1

• Gillette Children’s (2023) Deformational Plagiocephaly (Flat Head Syndrome). 

Section 5.2

• American Academy of Pediatrics (2020) American Academy of Pediatrics Releases Clinical Report: Differentiating Infant Head Shape Abnormalities. 
• American Academy of Pediatrics (n.d.) Safe Sleep. 

Section 5.3

None

Section 6.1

• Keegan’s 5K for Craniosynostosis Awareness (google.com)

Section 6.2

None

Section 7.1

• National Craniofacial Association (n.d) Apert syndrome. 
• National Craniofacial Association (n.d) Crouzon syndrome.
• National Craniofacial Association (n.d) Pfeiffer syndrome.  
• National Craniofacial Association (n.d.) Saethre-Chotzen syndrome.
• Gillette Children’s (n.d.) Apert Syndrome. 
• Genetic and Rare Diseases Information Center (2023) Apert Syndrome. 
• Genetic and Rare Diseases Information Center (2023) Crouzon syndrome. 
• Genetic and Rare Diseases Information Center (2023) Muenke syndrome. 
• Genetic and Rare Diseases Information Center (2023) Pfeiffer syndrome. 
• Genetic and Rare Diseases Information Center (2023) Saethre-Chotzen syndrome. 
• National Organization for Rare Disorders (2019) Apert syndrome. 
• National Organization for Rare Disorders (2019) Crouzon syndrome. 
• National Organization for Rare Disorders (2022) Pfeiffer syndrome. 
• National Organization for Rare Disorders (2023) Muenke syndrome. 
• National Organization for Rare Disorders (2015) Saethre-Chotzen syndrome. 

Section 7.2

• American Academy of Pediatrics (2017) Children with Congenital Hand Anomalies & Malformations.