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Updated race and ethnicity labeling coming to UNOS and OPTN data reports

Updated race and ethnicity labeling coming to UNOS and OPTN data reports

Beginning in late January 2022, labeling of race and ethnicity information for donors, recipients and candidates will change on a number of reports and data products accessible in the Data Services Portal as well as on the UNOS website and the Organ Procurement and Transplantation Network website. These changes will make summary reporting of race and ethnicity data clearer, more consistent and easier for users to interpret. These changes will not impact data collection.

Why are these changes happening?

These changes will make reporting of race and ethnicity more consistent with common health research reporting practices. Race and ethnicity are separate social constructs, and while they often need to be combined into a single variable for data analysis, the changes will help avoid misclassification of some groups.

What will be different?

When these changes go into effect, UNOS and OPTN reports and data products that currently refer to “Ethnicity” will refer to “Race/Ethnicity.”

The changes mean that new category descriptions will appear in data reports. These new category descriptions are:

  • White, Non-Hispanic
  • Black, Non-Hispanic
  • Hispanic/Latino*
  • Asian, Non-Hispanic
  • Amer Ind/Alaska Native, Non-Hispanic
  • Native Hawaiian/Other Pacific Islander, Non-Hispanic
  • Multiracial, Non-Hispanic

*All donors, candidates and recipients with reported Hispanic ethnicity will be included in the Hispanic/Latino category in UNOS and OPTN reports and data products

Data collection not impacted by changes

This change will be visible on a number of reports and dashboards accessible on the UNOS and OPTN websites, but these changes do not impact how donor, candidate or recipient data are collected by the OPTN.

There are no changes to how data about race or ethnicity are captured in UNet℠ or in any individual collection forms. The collection of the “Ethnicity/Race” field on OPTN forms and the appearance of these data in the UNet application system will not change.

What data does UNOS collect?

UNOS collects and manages all data that pertain to the patient waiting list, organ donation and matching, and transplantation occurring in the U.S. Learn more about how UNOS collects and reports data.

Questions?

If you have questions relating to the changes or about any UNOS or OPTN data tools or products, please contact [email protected] for additional information.

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