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Birth defects interstate data exchange: A battle worth fighting?

Authors

  • Cynthia Cassell,

    Corresponding author
    1. North Carolina Birth Defects Monitoring Program, State Center for Health Statistics, Division of Public Health, Raleigh, North Carolina
    • State Center for Health Statistics, Division of Public Health, DHHS, 1908 Mail Service Center, Raleigh, NC 27699-1908
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  • Cara Mai,

    1. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia
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  • Russel Rickard

    1. Colorado Responds to Children with Special Needs, Colorado Department of Public Health and Environment, Denver, Colorado
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  • Presented as a poster at the 9th Annual Meeting of the National Birth Defects Prevention Network, Arlington, VA, January 29–February 1, 2006.

    The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.

Abstract

BACKGROUND:

Regardless of where infants and children are delivered, diagnosed, or treated, an important aspect of population-based birth defects surveillance is ensuring the inclusion of children with birth defects in the catchment area. However, little is known as to how the lack of interstate birth defects data exchange affects program surveillance, monitoring, prevention, and referral activities. The study objectives were to determine the status of interstate birth defects data exchange agreements and to quantify statewide data on resident births occurring in nonresident states.

METHODS:

In 2004, surveys were distributed to all population-based birth defects programs in the United States to determine: 1) the types of interstate birth defects data exchange agreements that exist among birth defects programs, 2) perceived barriers in establishing exchange agreements, and 3) the extent to which out-of-state births affect a program's catchment area. The National Center for Health Statistics (NCHS) data for 2002 on live birth residency were used to determine the actual frequency of out-of-state live birth occurrence.

RESULTS:

Of the 52 states and territories that were surveyed, 65% (n = 34) responded. Approximately 21% (n = 7) of those that responded had an interstate data exchange agreement that allowed sharing of birth defects data with another state or a facility within another state. Approximately 53% (n = 18) of responding states indicated plans to develop an interstate birth defects data exchange agreement with other states, hospitals, or both. The NCHS data showed that the actual percentage of resident out-of-state live births ranged from 0.16 to 11.51. NCHS data also reveal that 78% of states would be able to capture >75% of their out-of-state births by sharing data on out-of-state births with the three neighboring states ranking highest in terms of such occurrences.

CONCLUSIONS:

Few states have interstate birth defects data exchange agreements, though all states have resident births occurring out of state. While suggestive, data beyond residency of live births are needed to quantify the degree to which the objectives of state-based birth defects programs are compromised. Resources exist to guide programs in establishing interstate data exchange agreements. Efforts to establish such agreements with only a few neighboring states could be a large step toward improving birth defects surveillance on a state, regional, and national level. Birth Defects Research (Part A) 79:806–810, 2007. © 2007 Wiley-Liss, Inc.

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