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Dental Public Health Activities: Descriptive Summaries

Statewide Craniofacial Anomaly Reporting and Referral Program

Practice Number: 16009
Submitted By: Division of Oral Health, Illinois Department of Public Health
Submission Date: April 2002
Last Reviewed: February 2013
Last Updated: February 2013
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The Illinois Department of Public Health (IDPH), Division of Oral Health (DOH) administers the Statewide Craniofacial Anomaly Reporting and Referral Program (CAP). CAP was developed in 1986 as a response to many children born with craniofacial anomalies (CFA) who were not being treated by a CFA team in treatment facilities (a CFA team of health care providers include oral surgeons, pediatric dentists, orthodontists, dental hygienists, social workers, audiologists, speech therapists, pediatricians and other specialists as needed). In addition, children went without care from a CFA team until they were enrolled in the school system and their anomaly was then detected. Research has demonstrated the relationship between late-detected craniofacial anomalies and hearing loss. CAP assists families of infants born with facial clefts through education and referral to a CFA team at specialized treatment centers. The program is a collaboration with IDPH Genetics and Vital Statistics programs and the Illinois Department of Human Services. CAP has three components: (1) education for parents of infants with craniofacial anomalies; (2) the development and distribution of educational materials for health professionals including hospital staff; (3) educational programs at local health agencies, pediatrician offices and dental offices as well as for the "0-3 Programs" (a state grant program that links children to health care and social service systems). Each month a DOH administrative assistant receives birth certificate records for all children born with facial clefts from the IDHS Adverse Pregnancy Outcome Reporting System. CAP provides parents with information regarding the location of CFA team treatment sites for their child with craniofacial anomalies. This information is mailed within the first two months of life for most children with CFA. The materials for this program cost on an average approximately $1,000 per year and State general funds are used to cover the expense. DOH is initiating plans with the IDPH Genetics Program to develop a mechanism of tracking children with clefts through their treatment. The program annually reaches approximately one of every 800 families with newborns in the state.

Contact Person(s) for Inquiries:

Julie A. Janssen, RDH, MA, Acting Chief, Division of Oral Health, Illinois Department of Public Health, 535 W. Jefferson Street, Springfield, IL 62761, Phone: 217-785-4899, Fax: 217-524-2831, Email:

Ann Roppel, RDH, BA, Oral Health Consultant, Illinois Department of Public Health, 2125 South First Street, Champaign, IL 61820, Phone: 217-278-5900, Email: