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Rhode Island Birth Defects Tracking Program

Project Summary

The Rhode Island Birth Defects Surveillance Program (RIBDSP) identifies newborns with birth defects by using hospital discharge data, which are linked to KIDSNET, a population-based information system developed by the Division of Family Health. KIDSNET receives prompt information on all births, including newborn hearing assessment, newborn developmental risk screening, and newborn heelstick (blood) screening. It also receives data from early intervention, home visiting, immunization, lead screening, vital records, and WIC programs. This information is available online to pediatric care providers who are connected to KIDSNET. Children who are not receiving services can be identified and contacted through the Family Outreach Program.

Through this project, the RIBDSP will broaden its case ascertainment methods and use additional sources, including child hospitalization data and data from Women and Infants Hospital and Rhode Island Hospital.
 

Surveillance

• Obtain cases monthly from Women and Infants Hospital, Kent County Hospital, and Rhode Island Hospital Genetic Counseling Center.
• Meet with staff from the Office for Raising Children with Special Health Care Needs (CSHCN) and Rhode Island Hospital Child Development Center to finalize data reporting strategies and obtain data on a monthly basis.
• Continue discussions with the Newborn Developmental Risk Screening Program and Visiting Nurse Agencies to facilitate their access to ICD-9-CM codes.
• Meet with the Newborn Hearing and Bloodspot Screening Programs to ensure that final diagnoses for hearing screening and positive heelsticks are available in KIDSNET and to the Birth Defects Program.
• Work with the Rhode Island WIC Program and Pediatric Provider Enhancement Project to identify new cases and obtain referral service information.
• Work with the Director of Health, community partners, and Birth Defects Advisory Council to develop and implement reporting requirements.
   

• Hire a parent consultant to help in developing quality assurance measures, educational materials, and program policies and procedures; and get input from other parents and families of children with birth defects.
• Develop a survey for families of children with sentinel conditions to determine satisfaction with the service system and identify barriers to care.
• Continue work with the RI March of Dimes to develop strategies to educate the public and health professionals about folic acid, preconception care, prematurity, genetics, and birth defects.
• Work with the Birth Defects Advisory Council, community partners, and providers to educate health professionals about mandates; procedures; services; and ethical, legal, and social issues in RI related to birth defects.
   

• Use KIDSNET to determine the proportion of children with birth defects that receive services.
• Continue to work with the Division of Family Health’s Medical Home Work Group to implement measures of the medical home and analyze data across programs.
• Convene a work group of Advisory Council members, providers, families, and support service agencies to improve information sharing.
• Work with the Family Outreach Program and Visiting Nurse Agencies to ensure medical home linkages. Review existing system issues, including capacity and follow-up.
• Work with the Division of Family Health’s Communications Unit to inform parents about birth defects and available services through the use of websites, brochures, information packets, and other channels.
   

Date: January 03, 2008
Content source: National Center on Birth Defects and Developmental Disabilities