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CDC HomeHIV/AIDS > Topics > Statistics and Surveillance > Guidelines > Integrated Guidelines for Developing Epidemiologic Profiles

Integrated Guidelines for Developing Epidemiologic Profiles: HIV Prevention and Ryan White CARE Act Community Planning
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Appendix A: Data Sources
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Supplemental Data Sources

Adult/Adolescent Spectrum of Disease (ASD)

Overview: An ongoing longitudinal surveillance cohort study that describes the spectrum and progression of HIV disease, including severe illness and death. Information on AIDS-defining conditions, other illnesses and symptoms, treatments, and lab parameters are abstracted from medical records by using a standardized form. In addition, gynecologic information (e.g., Pap smear, cervical cytology) is collected for women. Data are collected for the 12 months preceding enrollment, and re-abstractions are done every 6 months, until the patient either dies or is lost to follow-up.

Population: Persons 13 years and older with diagnosed HIV infection or AIDS who receive health care at a participating facility in the project area are eligible to participate in ASD. In each project area, facilities serving HIV-infected persons (clinics, hospitals, neighborhood health centers, private medical practices, and emergency rooms) are selected to participate as project sites. ASD project areas have designed sampling schemes to be as representative of the HIV/AIDS population in that area as possible.

Strengths: ASD data describe the spectrum of HIV disease that is documented in the medical chart. Data since January 1990 are available. ASD data are useful for assessing the use of prophylactic and antiretroviral treatment over time and for describing the occurrence of opportunistic illnesses and other conditions in persons infected with HIV. As of December 2002, more than 50,000 persons had been included in the ASD project.

Limitations: ASD data describe morbidity among persons who received medical care for HIV infection at a participating site (i.e., not population-based). The morbidity information in the medical chart may not be complete. Gynecologic information may be underreported because this information may appear elsewhere (woman may have gone to her Ob/Gyn rather than her HIV care provider). ASD data rely on the thoroughness of diagnostic testing and recording and the accuracy and completeness of medical records. Treatment and prophylaxis regimens in ASD refer to prescribed therapies: information on adherence is not collected.

Where available: Atlanta, Dallas, Los Angeles County, Denver, Detroit, Houston, New Orleans, New York City, Seattle; and Bayamon (Puerto Rico)

Contact person(s): State or local health department, HIV/AIDS surveillance coordinator or ASD site coordinator; CDC, Division of HIV/AIDS Prevention, Behavioral and Clinical Surveillance Branch

AIDS Progression Study

Overview: The AIDS Progression Study was designed to help in understanding the characteristics of HIV-infected persons in whom HIV infection progresses to AIDS and to explain why the progression to AIDS occurs. This study examines data on persons who died with AIDS to learn the reasons for the progression from AIDS to death. Data are abstracted from medical records during the 12 months preceding AIDS diagnosis. Data collected for this study include patient characteristics, HIV/AIDS–related history, testing history, AIDS-defining conditions, HIV exposure, and laboratory data.

Population: All persons with a diagnosis of AIDS or who died of AIDS, who were reported to the HIV/AIDS Reporting System after January 2000, and whose diagnosis of AIDS was made no earlier than January 1, 1999

Strengths: Data from the AIDS Progression Study are population-based and can be used to explain reasons for the progression from HIV infection to an AIDS diagnosis and to death from AIDS. The time frame for participation excludes persons whose diagnosis was made when appropriate treatment regimens were not available. Therefore, this study can examine whether progression is due to lack of adherence to treatment, failure to seek or receive appropriate care, infection with a resistant strain, or resistance to treatment. The 12-month period of review before diagnosis allows investigators to examine a patient’s medical history.

Limitations: The quality of information on a patient depends on the completeness of documentation in the patient’s medical chart. Locating all medical charts may not be possible; thus, the data may not represent all cases of AIDS diagnosed within the study time frame.

Where available: Boston, Chicago, Denver, Hartford (Connecticut), Los Angeles, San Francisco

Contact person(s): State or local health department, HIV/AIDS surveillance coordinator or AIDS Progression Study site coordinator; CDC, Division of HIV/AIDS Prevention, HIV Incidence and Case Surveillance Branch

Go to Supplemental Data Sources: ARVDRT

Last Modified: July 18, 2007
Last Reviewed: July 18, 2007
Content Source:
Divisions of HIV/AIDS Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
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