HIV Surveillance

The listed documents provide guidance about the surveillance case definition for HIV infection and reporting criteria for HIV infection and perinatal exposure to HIV infection. This guidance is intended for clinicians who diagnose persons with HIV infection, laboratories, HIV surveillance programs, and health department staff. Additional guidance for epidemiological analyses of HIV surveillance data are also listed.

Guidelines

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Current Guidelines Some sections may be out-of-date. Out of date/Superseded
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guidelines
Title and Description Publication
Year
Status

HIV Case Reporting and Surveillance

LOINC In Vitro Diagnostic (LIVD) HIV Test Code Mapping Tool.xlsx
To increase semantic interoperability for HIV laboratory reporting, the CDC Division of HIV Prevention, HIV Surveillance Branch developed a standardized mapping tool in coordination with Association of Public Health Laboratories, the Regenstrief Institute, Inc., and the CDC Division of Laboratory Systems. Using LOINC and SNOMED-CT to identify and report test results in electronic reporting systems facilitates timely and quality data reporting to state and federal public health agencies. This document aligns with the LIVD specification to provide LOINC and SNOMED mappings for HIV tests available in the United States.
2023 Check mark icon indicating Current Guidelines
Revised Surveillance Case Definition for HIV Infection — United States, 2014
Revises and combines the surveillance case definitions for HIV into a single case definition for persons of all ages (i.e., adults and adolescents aged ≥13 years and children aged <13 years). The revisions were made to address multiple issues, the most important of which was the need to adapt to recent changes in diagnostic criteria.
2014 Check mark icon indicating Current Guidelines
U.S. Department of Health and Human Services, Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status
The purpose of this guidance is to promulgate a set of uniform data collection standards for inclusion in surveys conducted or sponsored by HHS as required by Section 4302 of the Affordable Care Act.
2011 Check mark icon indicating Current Guidelines

Confidentiality, Privacy, and Data Security

Assurance of Confidentiality Statement [PDF – 137 KB]
This document describes the procedures and practices that DHP intends to use to protect the confidentiality of the data collected as part of HIV surveillance program activities.
2019 Check mark icon indicating Current Guidelines
Data security and confidentiality guidelines for HIV, viral hepatitis, sexually transmitted disease, and tuberculosis programs: Standards to facilitate sharing and use of surveillance data for public health action
Recommends standards for all NCHHSTP programs that, when adopted, will facilitate the secure collection, storage, and use of data while maintaining confidentiality.
2011 Check mark icon indicating Current Guidelines
HIPAA privacy rule and public health: Guidance from CDC and the U.S. Department of Health and Human Services
The purpose of this report is to help public health agencies and others understand and interpret their responsibilities under the Privacy Rule. Elsewhere, comprehensive DHHS guidance is located at the HIPAA website of the Office for Civil Rights.
2003 Check mark icon indicating Current Guidelines

Implementation Guidance

guidelines
Title and Description Publication

Year

Status
Integrated Guidance for Developing Epidemiologic Profiles [PDF – 3 MB]
Provides one set of guidance to help profile writers produce integrated epidemiologic profiles and advise them concerning how to interpret epidemiologic data in ways that are consistent and useful in meeting the planning and evaluation needs of both HIV prevention and care programs.
2022 Check mark icon indicating Current Guidelines

HIV and Perinatal HIV Exposure Reporting Case Report Forms

Please refer to the appropriate state or local health department HIV surveillance program for specific guidance on reporting requirements in your local area. Completed case reports should be forwarded to the health departments and not be sent directly to CDC.

Adult HIV Confidential Case Report Form (Patients ≥ 13 Years of Age at Time of Diagnosis) [PDF – 577 KB] 2019 Check mark icon indicating Current Guidelines
Pediatric HIV Confidential Case Report Form (Patients < 13 Years of Age at Time of Diagnosis) [PDF – 531 KB] 2019 Check mark icon indicating Current Guidelines
Perinatal HIV Exposure Reporting Form [PDF – 419 KB] 2019 Check mark icon indicating Current Guidelines