North Dakota utilizes a passive Birth Defect Surveillance program with information collected from birth and death certificates. However, in 2001 a group of statewide stakeholders started to meet formally to explore issues related to developing a Birth Defects Surveillance Program coordinated by the State System Development Initiative (SSDI) Program. In 2002 the group decided to specifically track children born with anencephaly, spina bifida, heart malformations and cleft lip and/or palate born from 1994 to present to enhance early identification, link to services, and prevent secondary disabilities, as well as to identify trends, prevalence, and potentially identifiable risk factors for prevention purposes. Data sources would be birth and death certificates, Program/Service information from CSHS, and health care claims data. Plans also included database development to collect, analyze, and provide summary reports. In 2003, the Division of Medical Genetics received a one-year grant from the State System Development Initiative to merge the two separate clinical genetic data collection systems into one Access database system. This system would also add demographics and patient information to support improvement in the capacity of the ND Title V program to conduct annual data linkages, utilize registries and surveys, and measure access and utilization of birth defects surveillance systems for the SSDI Program. For the Division of Medical Genetics, the data integration will improve the accessibility of data for analyzing the provision of genetic services and identify gaps in service, as well as performance measure reporting.

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