In December 2003, the Division of HIV/AIDS Prevention at CDC launched a Web-based survey on the needs for supplemental HIV/AIDS surveillance data in areas with low-to-moderate HIV/AIDS prevalence. The survey, developed in response to discussions at the National HIV Surveillance Coordinators Conference in June 2003, was designed to assess priorities for the collection of supplemental data. The AIDS surveillance coordinators in 34 states and 7 territories with low-to-moderate HIV/AIDS prevalence were invited to participate. Two reminders were sent before the termination of data collection on January 13, 2004.

The survey questionnaire, developed by the Division of HIV/AIDS Prevention, with input from, and review by, representatives of the National Alliance of State and Territorial AIDS Directors and the Council of State and Territorial Epidemiologists, was available to participants on a password-protected CDC Web site. The questions covered the following topics:

• Estimates of geographic distribution of persons living with HIV/AIDS in the state or territory (urban, rural, and suburban settings)
• Estimates of HIV/AIDS prevalence among specific groups (men who have sex with men, injection drug users, heterosexual adults with no identifiable risk) in the state or territory
• Estimates of HIV/AIDS prevalence among specific demographic groups (sex, age, race/ethnicity) in the state or territory
• Populations of emerging concern or for whom the state or territory has little or no data (racial/ethnic minority groups, immigrants, youth, college students, transgendered persons, heterosexual adults who do not inject drugs)
• Priorities for the collection of supplemental data (clinical outcomes, incidence estimation, targeted specimen collection, behavioral surveillance)
• Priorities for approaches to data collection (episodic, regional, rapid assessments)
• Priorities for short-term technical assistance (staff training, meeting support, tool kits for rapid assessments, listserve)
• Option of providing additional comments at the end of survey (Qualitative data are not included in this summary report.)

Responses were received from 21 (62%) of the 34 states and 0 of 7 territories (see Appendix A for a list of the invited states and territories and those who responded). The states that did respond identified key gaps in the content and process of surveillance data collection in areas with low-to-moderate HIV/AIDS prevalence.

Interest in three main content areas were identified: behavioral surveillance, incidence estimation, and clinical outcomes. Interest in targeted specimen collection (for example, serological surveys for prevalence estimation) was limited to 5 states. Respondents who expressed a preference for behavioral surveillance identified 2 top priorities: information on HIV risk behavior and use of HIV prevention services among HIV-infected and noninfected populations. Other key priorities in behavioral surveillance were issues concerning access to care for HIV-infected persons and the HIV testing history of noninfected populations. For incidence estimation, the main reported needs were technical support in statistical modeling and methods of estimating incidence. The top 3 priorities for clinical outcomes data were health care utilization, laboratory data, and information on how to address the reporting requirements of the Health Resources and Services Administration.

Respondents' preferences for approaches to data collection differed according to the type of data. Rapid assessments were preferred by those whose priorities were the collection of behavioral surveillance and clinical outcomes data. Regional approaches to data collection were preferred by respondents who assigned priority to incidence estimation and targeted specimen collection. Episodic data collection seems to be a feasible approach for all content areas.

The question about emerging concerns or groups for whom the respondents had little or no HIV/AIDS data elicited unanticipated results. A particularly striking finding was the large proportion of respondents who listed immigrants as an emerging concern. A less surprising, yet notable, finding was that most of the respondents specified racial/ethnic minority groups as an emerging concern. Immigrants and racial/ethnic minority groups also emerged as the top 2 groups for whom respondents said they had little or no data.

The findings presented in this summary report underscore the need to consider the next steps in assessing approaches that will meet the needs concerning the collection of supplemental data in areas with low-to moderate HIV/AIDS prevalence. These steps are to determine (1) which data collection methods are suitable in specific geographic locations (for example, rural vs. urban) and among specific populations (for example, men who have sex with men, injection drug users), (2) which approaches will work best in populations deemed of emerging concern or for whom areas with low-to-moderate prevalence have little or no data, and (3) how CDC and states or territories with low-to-moderate HIV/AIDS prevalence can best work together on these issues.