foundations to partially fund 24 registry projects. In 1998, RWJF established the All Kids Count II project by allocating additional funds to 16 of the most advanced developing registries to help them become fully operational by January 1, 2000 (Watson et al., 1997; Wood et al., 1999; Horne et al., forthcoming).
To address the lack of consistency among different registry systems, the All Kids Count initiative developed a 20-item list of ideal components for registries (RWJF, 1996)7 The CDC National Immunization Program (NIP), in conjunction with its state and local grantees, subsequently developed a list of 12 attributes that define the minimum necessary elements of an operational registry (information provided by CDC).
The registry effort received additional support in 1993, when as part of the Childhood Immunization Initiative, President Clinton offered a challenge to create “a nationwide system of state- and community-based information systems” (Kilbourne, 1998; NVAC, 1999b). In response, the NIP assembled a task force to undertake an initiative on immunization registries, guided by an NVAC work group (NVAC, 1999b). Through public meetings and focus groups, the work group determined that registries in the United States should be a “nationwide mosaic of interoperable systems” as opposed to a federally based information system (Kilbourne, 1998:10).
The development or implementation of registries is a required condition for CDC’s state and local immunization grant awards. According to a 1999 CDC survey, 92 percent (59 of 64) of federal immunization grantees (states, cities, and territories) had met this requirement. Only a small number of these registries meet the fully functional standards set by NVAC or RWJF, however (information provided by CDC; NVAC, 1999b; Wood et al., 1999). Currently 34 states and the District of Columbia have operational registries that can import or export data from a central point (J.Harrison, CDC, personal communication, 1999). There are 9 states in which 75 percent or more of the children under age 6 are included in the state’s immunization registry. Another 5 have registries that include 50 to 74 percent of children (see Figure 4–1).8
A separate measure of registry implementation is provider participation. As of January 2000, 24 states had enrolled a majority (50 percent or more) of public providers in their registries. Yet recruiting private providers has been a major barrier to registry development.9 Only 11 state registries have over 50 percent enrollment of private providers. It is important to note that provider enrollment does not ensure provider participation.10 For example, although Michigan has 71 percent of all providers enrolled in its state registry, only 34 percent of enrolled providers are actually submitting data (see Figure 4–2).