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child, information systems, newborn dried blood-spot screening, newborn screening, public health informatics, systems integration



  1. Wild, Ellen L. MPH
  2. Hastings, Terry M. MA
  3. Gubernick, Ruth MPH
  4. Ross, David A. ScD
  5. Fehrenbach, S. Nicole MPP


The Genetic Services Branch, Maternal and Child Health Bureau of the Health Services and Resources Administration has provided funding to state health departments to integrate their newborn dried blood-spot screening programs with other early child health information systems since 1999. In 2001, All Kids Count conducted site visits to these grantees to identify and describe best practices in planning, developing, and implementing their integration projects. The site visits were organized around 9 key elements considered critical to the success of an information systems integration project: leadership, project governance, project management, stakeholder involvement, organizational and technical strategy, technical support and coordination, financial support and management, policy support and evaluation. Best practices for each of the key elements and 5 lessons learned were documented in Integration of Newborn Screening and Genetic Service Systems with Other Maternal & Child Health Systems: A Sourcebook for Planning and Development. The lessons learned are overarching conclusions that agencies should consider when planning and implementing integrated information systems. This article briefly describes the key elements, their best practices as implemented by states, and the lessons learned.